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Getting your eyes tested when you have M.E. variable eyesight

trails

Senior Member
Messages
114
Location
New Hampshire
I have very similar issues regarding fluctuating visual acuity. Along with the symptoms listed by Dr. Shepherd, I would add that I have a near pervasive tightness (or stiffness) in the muscles surrounding the eyes. Though almost always present, this symptom does wax and wane in terms of severity, and seems to directly correlate to the severity of brain fog I'm experiencing at any given time.
 

Ysabelle-S

Highly Vexatious
Messages
524
My principle memory of the onset of eyesight problems is of noticing it during long walks. Later I noticed it in other ways, though I most remember the awful glasses I got which were unusable. My eyesight is worse with PEM or after, maybe even during, activity. I'm definitely experiencing reading fatigue with books (and I used to be a huge reader), though not so much on a screen. I think we can also sometimes have problems with depth perception. I think I read that somewhere. I used to have that problem in cars, with the perforated fabric on the ceiling of the car. I often struggled to judge the distance and would try and reach out the wrong distance. Must have been partly a problem with the material's pattern, and maybe in that case was not related to ME, though I don't recall it happening before. Sales display carousels would also make me dizzy if they started turning round, but that was only some of the time.
 

mermaid

Senior Member
Messages
714
Location
UK
@Ysabelle-S - interesting question, as I now have multiple problems with my eyes, what with the ME issues, plus having a macular hole in one eye 7 years ago with resultant op for that and a cataract following, now a detached retina in the other eye (7 weeks ago!), with resultant op slowly repairing thankfully, with cataract to come, PLUS frequent ocular migraines sometimes both eyes, sometimes one sided! Oh boy what a mix.

I too have blurriness first thing in one eye,(the one from the earlier operation), though recently it seems to have improved (don't know why), however I now have a lot of allergy since my eye op (probably triggered by the pharmaceutical meds is my guess), and a few weeks ago I went for an eye test at the hospital post eye op, and it was my 2nd check up. I was horrified to see that the eye chart was completely blurred with the eye recently operated on, and seemingly my sight was worse than the 1st check up!! At that point they handed me a 'thingy' (sorry don't know the name) which was something you hold up to the eye with lots of small holes in it, while shielding the other eye, and bingo! I could see OK. Not sure entirely how that works, but it sorted out the blur at any rate.

I was due to go for an eye check for new glasses today actually, post op, but had to cancel due to this wretched allergy which this time is causing nose streaming rather than eye blur.

Goodness, it's a problem isn't it - and I don't have an easy answer for you. Luckily my recent op has actually resulted in an improvement curiously, as previously I was quite long sighted in both eyes, but now the 'bad' eye has become short sighted following the op (it can change the shape of the lens, and the previous op made the other eye long sighted!), so I can now read writing without my glasses that I needed previously. Nice to have a bonus from a scary operation.
 

Ysabelle-S

Highly Vexatious
Messages
524
@Ysabelle-S - interesting question, as I now have multiple problems with my eyes, what with the ME issues, plus having a macular hole in one eye 7 years ago with resultant op for that and a cataract following, now a detached retina in the other eye (7 weeks ago!), with resultant op slowly repairing thankfully, with cataract to come, PLUS frequent ocular migraines sometimes both eyes, sometimes one sided! Oh boy what a mix.

I too have blurriness first thing in one eye,(the one from the earlier operation), though recently it seems to have improved (don't know why), however I now have a lot of allergy since my eye op (probably triggered by the pharmaceutical meds is my guess), and a few weeks ago I went for an eye test at the hospital post eye op, and it was my 2nd check up. I was horrified to see that the eye chart was completely blurred with the eye recently operated on, and seemingly my sight was worse than the 1st check up!! At that point they handed me a 'thingy' (sorry don't know the name) which was something you hold up to the eye with lots of small holes in it, while shielding the other eye, and bingo! I could see OK. Not sure entirely how that works, but it sorted out the blur at any rate.

I was due to go for an eye check for new glasses today actually, post op, but had to cancel due to this wretched allergy which this time is causing nose streaming rather than eye blur.

Goodness, it's a problem isn't it - and I don't have an easy answer for you. Luckily my recent op has actually resulted in an improvement curiously, as previously I was quite long sighted in both eyes, but now the 'bad' eye has become short sighted following the op (it can change the shape of the lens, and the previous op made the other eye long sighted!), so I can now read writing without my glasses that I needed previously. Nice to have a bonus from a scary operation.

You've certainly had your share of eye issues! I admit, I'm somewhat queasy about eye ops!

Our eyesight symptoms have been largely sidelined, but it's one of the more practical day-to-day problems many of us face. Glad there's research being done. I think next time I do a book clear out- find it hard to get rid of many - I might start with any that have uncomfortably small text! I read better off a screen. It's twenty years or more - closer to 25 more like - since I've seen an optician. I had a long period where blurred eyesight was just less of a problem, but I'd like to try and get back to reading again, and reading from the page is very wearing.

One thing I do recall is that it took longer for my eyes to adjust from looking further in the distance to up close, and vice versa. Even decades ago that was an issue. But it was variable. There were times when I didn't notice it.
 

geraldt52

Senior Member
Messages
602
Have you considered just getting "reading glasses" at the drug store, Ysabelle-S? I've used them for probably 20 years, because my distance vision is fine but I can't read things close up. I have several "strengths" because I need something different for reading, seeing really close, and for the computer...they're like $10 a pair.

I too have blurred vision on days that I'm struggling, but I don't think that is a vision problem per se...more a brain problem.
 

Ysabelle-S

Highly Vexatious
Messages
524
Have you considered just getting "reading glasses" at the drug store, Ysabelle-S? I've used them for probably 20 years, because my distance vision is fine but I can't read things close up. I have several "strengths" because I need something different for reading, seeing really close, and for the computer...they're like $10 a pair.

I too have blurred vision on days that I'm struggling, but I don't think that is a vision problem per se...more a brain problem.

I've just looked up an option for that. Thanks for the recommendation, will check it out.
 

mermaid

Senior Member
Messages
714
Location
UK
You've certainly had your share of eye issues! I admit, I'm somewhat queasy about eye ops!

Our eyesight symptoms have been largely sidelined, but it's one of the more practical day-to-day problems many of us face. Glad there's research being done. I think next time I do a book clear out- find it hard to get rid of many - I might start with any that have uncomfortably small text! I read better off a screen. It's twenty years or more - closer to 25 more like - since I've seen an optician. I had a long period where blurred eyesight was just less of a problem, but I'd like to try and get back to reading again, and reading from the page is very wearing.

One thing I do recall is that it took longer for my eyes to adjust from looking further in the distance to up close, and vice versa. Even decades ago that was an issue. But it was variable. There were times when I didn't notice it.
@Ysabelle-S I have decided to make it one of my missions in life now to say to people that eye ops are not as bad as one fears. So many people ARE queasy about them, and if you had asked me 10 years ago which issue I feared most it would have been an eye op, but here I am 7 years on, and 3 ops under my belt, and none were bad at all. No pain as the anaesthetic really does work, though I did ask for a sedative each time, which worked too!

I can understand the reluctance to read small print though now. Post op each time I have struggled with print and after the 1st op I gave up for a while, as the computer was so much easier, as you can enlarge and it is back lit. Now however I am back to print as well. I even sent off for a magnifying glass that you can put over the page, but Amazon have let me down (it was due to come from China) and it never arrived. In the 6 weeks I have waited my eyes are good enough without it though!

The only thing I would say re the optician is that they do not just look for getting you the right glasses, but will check eye pressure (can get glaucoma without realising it as my sister in law did), and will look for early signs of eye disease - so please DO go if only for this. It really really is worth it, as I know myself.
 
Messages
2,125
Have you considered just getting "reading glasses" at the drug store, Ysabelle-S? I've used them for probably 20 years, because my distance vision is fine but I can't read things close up. I have several "strengths" because I need something different for reading, seeing really close, and for the computer...they're like $10 a pair.

I too have blurred vision on days that I'm struggling, but I don't think that is a vision problem per se...more a brain problem.
Exactly what I said "The way I cope (and it's definitely not ideal) is I have loads of different pairs of reading glasses of varying strengths and pick which suit whatever I'm doing. eg different pair to watch t.v. to being on the pc, close up reading etc etc"
except I'm in the UK and get mine from the £1 shop!
but will check eye pressure (can get glaucoma without realising it as my sister in law did), and will look for early signs of eye disease - so please DO go if only for this
This is why I think I need to get it checked out...........I wonder if you can just ask for the tests without actually doing the other stuff(?)
 

Ysabelle-S

Highly Vexatious
Messages
524
Exactly what I said "The way I cope (and it's definitely not ideal) is I have loads of different pairs of reading glasses of varying strengths and pick which suit whatever I'm doing. eg different pair to watch t.v. to being on the pc, close up reading etc etc"
except I'm in the UK and get mine from the £1 shop!

This is why I think I need to get it checked out...........I wonder if you can just ask for the tests without actually doing the other stuff(?)

I think the actual eye test is free anyway. I could do it that way, since I haven't had them checked in a long time. The reading glasses place I found has a test you can do yourself, so it's always a backup if I got normal glasses and yet again they didn't work!
 

Ysabelle-S

Highly Vexatious
Messages
524
@Ysabelle-S I have decided to make it one of my missions in life now to say to people that eye ops are not as bad as one fears. So many people ARE queasy about them, and if you had asked me 10 years ago which issue I feared most it would have been an eye op, but here I am 7 years on, and 3 ops under my belt, and none were bad at all. No pain as the anaesthetic really does work, though I did ask for a sedative each time, which worked too!

I can understand the reluctance to read small print though now. Post op each time I have struggled with print and after the 1st op I gave up for a while, as the computer was so much easier, as you can enlarge and it is back lit. Now however I am back to print as well. I even sent off for a magnifying glass that you can put over the page, but Amazon have let me down (it was due to come from China) and it never arrived. In the 6 weeks I have waited my eyes are good enough without it though!

The only thing I would say re the optician is that they do not just look for getting you the right glasses, but will check eye pressure (can get glaucoma without realising it as my sister in law did), and will look for early signs of eye disease - so please DO go if only for this. It really really is worth it, as I know myself.

Yes, there are certainly good reasons to go for an eye test. I shall get round to it in due course. It's been on my mind as something I'll have to sort out at some point.

Good to hear that the op was nowhere as bad as feared!
 

mermaid

Senior Member
Messages
714
Location
UK
Exactly what I said "The way I cope (and it's definitely not ideal) is I have loads of different pairs of reading glasses of varying strengths and pick which suit whatever I'm doing. eg different pair to watch t.v. to being on the pc, close up reading etc etc"
except I'm in the UK and get mine from the £1 shop!

This is why I think I need to get it checked out...........I wonder if you can just ask for the tests without actually doing the other stuff(?)

@slysaint In the UK you are given a prescription at the end for what your eyes tested as, and you can use that prescription at any optician - you do not have to buy them from that shop, so essentially even if they test your eyes you can just ignore that bit, and take note of the other bits. Not sure what they would say to not doing it though... in the UK they get paid by the NHS for doing it all (I don't pay as I am over 60) and even younger people are subsidised I think.
 

geraldt52

Senior Member
Messages
602
Exactly what I said "The way I cope (and it's definitely not ideal) is I have loads of different pairs of reading glasses of varying strengths and pick which suit whatever I'm doing. eg different pair to watch t.v. to being on the pc, close up reading etc etc"...

Sorry, slysaint, didn't mean to pile on your post. I'm often guilty of not reading all the things that have already been posted on a topic, because there is just too much for me to read on PR.

I buy mine on Ebay because there is a much larger selection of styles and strengths than at the corner drug store...and, best of all, they come to my door!
 

JohnCB

Immoderate
Messages
351
Location
England
A few comments from my own experience -

- in the UK, once you have your prescription, you can have it made up anywhere. I used an internet supplier and had three pairs made up, one for reading, one for distance and a mid range pair (prescribed for 1.5 metre distance). Together they cost about the same as a single pair at a high street optician.

- unless I need critical focussing, most of the time I use the mid-range pair around the house.

- I had previously used varifocals but decided to go back to separate single vision lenses. My problem with varifocals is that instead of moving my eyes across a page I had to move my head to keep looking through the part of the lens best suited to the distance (especially with a newspaper).

- even if using a screen, bright room light will make the pupil narrow and then the eye doesn't need to focus as accurately. A bright reading light helps me.

- it may be worth trying cheap reading glasses to help assess if reading glasses would help, but remember that these will never do anything for astigmatism. If you get headaches reading or on the PC, the problem may well be astigmatism and you aren't going to sort that out without getting an eye test. Here in the UK is an eye test is cheap under the NHS and the optician can't force you to buy your glasses from them. Take the prescrition form and buy your glasses where you want. As I said above, I got my present glasses from an internet supplier and all was good.
 

TrixieStix

Senior Member
Messages
539
Information on research into visul problems in ME/CFS

NB - this is a conference report


Dr Claire Hutchinson, School of Psychology, University of Leicester


Visual processing and ME


Dr Hutchinson gave an interesting presentation covering the sort of visual problems that people with ME/CFS commonly report. She also described the way in which she has been investigating these symptoms in a group of 63 people with ME/CFS to see if they can be confirmed by objective measures of visual performance.


Visual symptoms are quite commonly reported in a range of neurological diseases such as Alzheimer's and Parkinson's disease. Some of these symptoms may be related to what is termed cortical hyperexcitability - in other words, parts of the brain involved with visual messages become over sensitive. There is currently very little information in the medical literature about visual symptoms in ME/CFS but these problems are frequently discussed on social media and may have a significant impact on the quality of everyday life. Some people, for instance, stop driving as a result.

This has been my experience. 6 months ago my worst ever PEM crash began with a sudden change in my vision that were severe enough that my primary doctor told me to go to the ER. They found no serious acute physical illness that would cause such symptoms and I was sent to a Neuro-Opthamologist who diagnosed me with a rare kind of migraine. A persistent visual migraine in which you get visual aura symptoms continuously and for an extended period (days, weeks, months, years... 24/7) but no headache. If I did not have ME/CFS I would accept such a diagnosis fully, but I think it could be a result of ME/CFS and not related to migraine at all. Or perhaps it is this rare form of migraine and the ME/CFS made me more prone to it?
 

wastwater

Senior Member
Messages
1,271
Location
uk
There some research dr who studies the eye and related immune conditions maybe this would be a different path for cfsme
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
This has been my experience. 6 months ago my worst ever PEM crash began with a sudden change in my vision that were severe enough that my primary doctor told me to go to the ER. They found no serious acute physical illness that would cause such symptoms and I was sent to a Neuro-Opthamologist who diagnosed me with a rare kind of migraine. A persistent visual migraine in which you get visual aura symptoms continuously and for an extended period (days, weeks, months, years... 24/7) but no headache. If I did not have ME/CFS I would accept such a diagnosis fully, but I think it could be a result of ME/CFS and not related to migraine at all. Or perhaps it is this rare form of migraine and the ME/CFS made me more prone to it?


Yes, when I have severe PEM first I get doublevision, then I go 'blind' . I seem to not be able tocomprehend what is around me visually, a bit like a migraine aura. Butmine only lasts around 6 hours.
 

TrixieStix

Senior Member
Messages
539
Yes, when I have severe PEM first I get doublevision, then I go 'blind' . I seem to not be able tocomprehend what is around me visually, a bit like a migraine aura. Butmine only lasts around 6 hours.
It's looking like my episode of "crazy vision" might have been vestibular in origin...perhaps "Labrynthitis"? It's now looking like I may have a rare autoimmune disease called "Relapsing Polychondritis" and it can cause flares of vestibular symptoms.