Sasha
Senior Member (Voting Rights)
@Jonathan Edwards, does this phenomenon seem odd to you and plausibly part of the hypothalamic-pituitary hypothesis that you're currently considering? Does it happen in other conditions?
Do you have problems focusing your eyes? What do we think it means in terms of ME/CFS?
- Thread starter Sasha
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To add to my earlier comment, I had a home eye test a couple of years ago and optician found glaucoma in both eyes which he said was not age related. It was usually the result of an underlying illness and asked if I had any. Told him about ME/CFS and he suggested I mention it to GP. I don't discuss ME/CFS with my GP except in respect of home visits for bloods and vaccinations.
Known as secondary glaucoma, which includes problems focusing not corrected by prescription glasses, is discussed here. It contains lists of diseases and medications which can cause it.
Known as secondary glaucoma, which includes problems focusing not corrected by prescription glasses, is discussed here. It contains lists of diseases and medications which can cause it.
I have two distinct vision problems.
The main one is my brain does not process visual information properly. It’s like it’s on low power mode. This is permanent and unchanging for a decade, but used to be only in PEM. It worsens in PEM. I know it’s not my eyes bc I’ve had extensive eye exams with neuro-ophthalmologist. My eyes test 20/20 on eye exam and all ophthalmology tests normal. But my vision is permanently altered in that I cannot focus, there is movement in my vision when I try to focus, lack of depth of field and photophobia. It’s similar to being intoxicated or stoned. It’s like being in a dream. It’s much worse in daylight / sunlight but also computer / tv use.
The second eye issue is muscular — the muscles around my eyes seem to weaken progressively during social visits where I am trying to maintain eye contact, be attentive, smile and engage in conversation. I start to feel my eyes straining to maintain eye contact and wanting to droop. I start to squint and crash. My face goes into a weird mask with squinty eyes, raised brows and a rictus smile. Smiling also difficult. It’s much worse with new people / novel situations bc I’ve realized I try to emote more and be more expressive with new people in an effort to be friendly. With people I know I can maintain a relaxed unemotive face and drop eye contact and speak less. It’s an interesting type of PEM bc my facial muscles are very affected but I can get up and walk around the house and move the rest of my body fine.
The main one is my brain does not process visual information properly. It’s like it’s on low power mode. This is permanent and unchanging for a decade, but used to be only in PEM. It worsens in PEM. I know it’s not my eyes bc I’ve had extensive eye exams with neuro-ophthalmologist. My eyes test 20/20 on eye exam and all ophthalmology tests normal. But my vision is permanently altered in that I cannot focus, there is movement in my vision when I try to focus, lack of depth of field and photophobia. It’s similar to being intoxicated or stoned. It’s like being in a dream. It’s much worse in daylight / sunlight but also computer / tv use.
The second eye issue is muscular — the muscles around my eyes seem to weaken progressively during social visits where I am trying to maintain eye contact, be attentive, smile and engage in conversation. I start to feel my eyes straining to maintain eye contact and wanting to droop. I start to squint and crash. My face goes into a weird mask with squinty eyes, raised brows and a rictus smile. Smiling also difficult. It’s much worse with new people / novel situations bc I’ve realized I try to emote more and be more expressive with new people in an effort to be friendly. With people I know I can maintain a relaxed unemotive face and drop eye contact and speak less. It’s an interesting type of PEM bc my facial muscles are very affected but I can get up and walk around the house and move the rest of my body fine.
Jonathan Edwards
Senior Member (Voting Rights)
I am not sure what to make of it.
Control of focusing is likely to occur in the midbrain colliculi, which are quite near hypothalamus but not directly next to it.
Some other relevant threads on forum. Pattern difficulty is a big one for me too — horizontal lines especially disorienting.
Sasha
Senior Member (Voting Rights)
I'm honestly surprised to see so many accounts racking up so quickly on the thread, which is making me think it's much more common than I thought it was. I used to read about it quite often in the charity mags decades ago but it seems to have disappeared as a thing that gets discussed. I don't remember there being a DecodeME question on it in their questionnaire.
I am not surprised. It’s one of my most disabling symptoms and i see it mentioned on r/cfs a lot. Seems to vary a lot in how it’s described though.
There’s also the fact that Very Severe patients cannot use their eyes and are hence laying in dark rooms. I have assumed from my own symptoms that It’s not just photophobia — they are overwhelmed by processing visual information.. It goes along with sound sensitivity. I feel it is a part of the overall symptom of brain being unable to process information normally (visual, sound, complex ideas, intense communication, touch).. Whitney Dafoe used to say he’d crash from looking at pictures or patterns. This is just an extreme version of what I suffer.
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Kitty
Senior Member (Voting Rights)
It would be interesting to know what happens to healthy people when they're very fatigued and unwell at the same time. It might be that there are distinct differences.
My impression though is that when friends feel the way I do in PEM, they avoid things like reading that are hard on the eyes. They put the TV on to occupy their brains but don't really watch it.
I also think @Braganca makes good point about processing. A significant part of my 'deafness' is overwhelmed processing capacity.
MrMagoo
Senior Member (Voting Rights)
I’ve always had astigmatism and sub-par eyesight.
The “loss of focus” thing I experience I assume is ME, as it only started after I got ME.
I think it is fatigue-related (as in - tired muscles having a little moment) it’s worse in PEM and can happen at any point in a day, but the most frequent times used to be when I was working, on the way to the tube - in the morning.
So I’d get up, dressed etc, leave the house and after 5 mins or so would think “why why why did I forget my contact lenses before I left? I can’t see a flipping thing” fish out my glasses, put them on and realise I was wearing contact lenses, I just couldn't see.
As I wore +4.00 (long sighted) at that time, you get an idea of how big the difference in vision was, that I thought I’d forgotten my lenses.
The “loss of focus” thing I experience I assume is ME, as it only started after I got ME.
I think it is fatigue-related (as in - tired muscles having a little moment) it’s worse in PEM and can happen at any point in a day, but the most frequent times used to be when I was working, on the way to the tube - in the morning.
So I’d get up, dressed etc, leave the house and after 5 mins or so would think “why why why did I forget my contact lenses before I left? I can’t see a flipping thing” fish out my glasses, put them on and realise I was wearing contact lenses, I just couldn't see.
As I wore +4.00 (long sighted) at that time, you get an idea of how big the difference in vision was, that I thought I’d forgotten my lenses.
Kitty
Senior Member (Voting Rights)
Mornings are worse for me too. Also much more likely to get retinal migraine in the first couple of hours after waking.
I definitely noticed what I called 'blurry vision' with ME/CFS onset. I noticed it most when driving, I could not read the street signs and it caused me problems navigating. It was very bothersome in the first few years. I don't notice it as much now, but I don't drive as much either.
I mentioned it to my optometrist at the time, who I had seen for years as I wear contact lenses. I remember we walked out of the clinic so I could explain better what I could and could not see, how the street signs were blurry. The weird thing was and is that it is intermittent, it's not a prescription issue. The blurriness tracks with other symptoms.
Before seeing my optometrist, I had told my GP about the blurry long range vision and she had referred me to an opthalmologist. The opthalmologist gave me various tests and told me that it is just that my eyes were dry and old. He became quite abusive when I tried to explain that the onset of the blurriness coincided with the start of the ME/CFS symptoms and that I'd seen other people with ME/CFS report blurry vision problems, that it might be worth investigating further. He said he knew as much about CFS as he needed to know. It was a horrible experience, and it cost me a lot of money.
My optometrist gave me a field test, and I had spots of loss of vision in both eyes. (I'm not talking about the fovea, there were multiple scattered spots with no vision in each eye.). My optometrist was quite concerned, she had not seen that before and was going to refer me to a specialist, but I moved countries and it didn't happen, and I was in no hurry to see another opthalmologist. I noticed the blind spots when reading, there would be blurry patches and it was quite distracting. I don't think I've experienced that for a while now. I've wondered if it was retinal migraines.
(Sorry Sasha, I guess that last phenomenon is not a focus issue, but it is part of my blurry vision story.)
I mentioned it to my optometrist at the time, who I had seen for years as I wear contact lenses. I remember we walked out of the clinic so I could explain better what I could and could not see, how the street signs were blurry. The weird thing was and is that it is intermittent, it's not a prescription issue. The blurriness tracks with other symptoms.
I had this problem too, my experienced optometrist had problems working out my prescription because it varied.
Before seeing my optometrist, I had told my GP about the blurry long range vision and she had referred me to an opthalmologist. The opthalmologist gave me various tests and told me that it is just that my eyes were dry and old. He became quite abusive when I tried to explain that the onset of the blurriness coincided with the start of the ME/CFS symptoms and that I'd seen other people with ME/CFS report blurry vision problems, that it might be worth investigating further. He said he knew as much about CFS as he needed to know. It was a horrible experience, and it cost me a lot of money.
My optometrist gave me a field test, and I had spots of loss of vision in both eyes. (I'm not talking about the fovea, there were multiple scattered spots with no vision in each eye.). My optometrist was quite concerned, she had not seen that before and was going to refer me to a specialist, but I moved countries and it didn't happen, and I was in no hurry to see another opthalmologist. I noticed the blind spots when reading, there would be blurry patches and it was quite distracting. I don't think I've experienced that for a while now. I've wondered if it was retinal migraines.
(Sorry Sasha, I guess that last phenomenon is not a focus issue, but it is part of my blurry vision story.)
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Yes I think I have the same intermittent vision issue others are describing. It's hard to tell what exactly is going on (if it's muscles, dryness or neurological) but it can make it temporarily hard to read a screen. It comes and goes with other symptoms and feels sort of analogous to the trouble I have with fine motor actions, in that something is clearly not working quite right but it's nebulous and fluctuating. It has started a few years into my ME/CFS and I'm in my early 30s (with otherwise the same vision as ever) so I assume it's not age-related?
Kitty
Senior Member (Voting Rights)
I've talked about it to both the GP and the optometrist, and they both said it characteristically only affects one eye. The vision in the other one's normal, so I can see fine if I cover the affected eye.
The blurring I get is the whole visual field, a bit like trying to see underwater. I could say whether a sheet of paper was blank or had print on it, but couldn't discriminate between a photo and a block of type. Some people apparently just get blurry areas or flashing shapes.
I'd say me too. I'm sat here finding it complicated because I got a lot more severe. But also age-wise crossed thresholds where you might start to get age-related changes. And when I think about it because I was so ill was permanently at home having to do everything online and using a smart phone more vs when I was less ill and crashing out at the weekend I can't remember doing much more than sleep (and only got a smart phone quite late plus wasn’t on it as much)
I now have glasses for different distances (but not for being outside, just screens/reading) because it is fatigue-related on eg whether looking at TV further away vs phone or laptop. And these help, and looking eg at phone or other screen when I know I shouldn't as not great without glasses can often trigger things. But its also like a bit of a light haze. I got it from overhead lights where after 25 minutes I found I couldn't focus on the person in front of me as I was conversing. So there is like a migraine type element I think of simply because I used to get migraines like that particularly on Fridays in the office and mine begin with aura. I think if it doesn't sound ridiculous the two slightly interact for me. And it feels like it is light-related because of that constant symptom.
Oh and I really can't do fast-moving anything on a screen and haven't for years, it has slowly been limiting my TV/film watching. I used to put it down to the motion-sickness type thing I get (where eyes don't match body) and would never eg do an IMAX as it would be literal torture. To be really weird the B12 makes a difference for me in this effect (things moving on a screen). It's funny because I know that there are specific cells in the eyes that actually directly pick up 'movement/moving things' eg if someone entered a room to my side or a bird flew at the window, but curiously thinking now whether with screens if there is movement on them which sets of things it is actually getting picked up by given it's in the same eg 32inch space. Not that I can cope with having people moving around me in the home when I'm ill either, it just feels more whole-body perhaps.
How fast something moves between scenes vs something stage in one camera angle for a few minutes matters so things from the same 'team' that does things like Law and Order if anyone is familiar with how it chunks up its episodes (I wondered whether it was slightly deliberate, and even related to a condition - like neurodivergence or something - as all the other ones by the same director or producers have similar pacing) or a long tv interview of a person is better than a programme flitting, there are so many programmes I intuitively know I can't do but can't name them
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Utsikt
Senior Member (Voting Rights)
This sound just like me.
neophyte32
Senior Member (Voting Rights)
I have exactly the same problems. Severe dry eyes, and my eyes start watering as soon as I look at a screen, especially in the morning. It makes no sense. An ophthalmologist diagnosed me with dry eye in my right eye back in 2022, and then again in 2024, along with inflammation and other issues.
I haven't been able to watch TV for a year and a half now. Within just a few moments, my eyes start burning, I develop headaches around my forehead, and my tinnitus gradually gets worse.
MrMagoo
Senior Member (Voting Rights)
For me the ME thing links it, due to being at very random times. You might expect it after a day at work, exerting, reading a screen, of course eyes would be dry and tired by then.
So why does it happen in the morning?
Exactly like why can I hold a cup all day long, but sometimes in the middle of the day I drop it? But not in the evening?
There’s got to be signalling problems with the muscles.
So why does it happen in the morning?
Exactly like why can I hold a cup all day long, but sometimes in the middle of the day I drop it? But not in the evening?
There’s got to be signalling problems with the muscles.
StellariaGraminea
Senior Member (Voting Rights)
About 2yrs, or maybe 3, into LC/ME I started to have random eye focusing issues. Not particularly associated with PEM. It didn't occur often and seemed completely random, though possibly more often in evening. After maybe 6mths or so, it just went away and hasn't come back again (nearly 7 years in now). I had a lot of neurological symptoms about the same time (that have also improved) and suspect the focus issue was probably related.
Utsikt
Senior Member (Voting Rights)
My eyes are the opposite, they start running sometimes! Neither are any fun..