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

[Ysabelle-S]

Hi there,

Back when I first fell ill with the virus that caused ME, my eyesight suddenly went from seeming perfect (though I'd never had a test), to being blurred at times. I went to the optician and got glasses, but they never worked. They were terrible, and my eyesight was okay part of the time, so I just abandoned them. Had another eye test a few years later, got another pair of glasses that didn't work and an optician who didn't understand the issue, but thought the first pair were ridiculous for me. I've not worn glasses since then, and my eyesight wasn't as affected for a long time. So that's decades without glasses, but I now can't read small print (most likely age-related), and I definitely need a pair, but past experience has made me wary. Variable eyesight has put me off going. I'm long-sighted, so the issue is more reading than anything else. I mostly read off the laptop, so I can always adjust print size if necessary, but there are books on my shelves I'd struggle with now, which makes reading more wearing.

I wondered how others dealt with the glasses/eye test. I checked for other threads, but didn't notice one on exactly this subject, but I might have missed it. Noticed one on adjusting to glasses and how long it took.

 

[ryan31337]

Hi @Ysabelle-S,

Similar experience here. Good vision prior to illness, in my early 20s I started getting slight fuzziness when very tired or in PEM. I actually had an eye-test on a PEM day, my energy ran out and/or OI hit half way through the test and vision changed, confusing the optician I got a very small prescription but never needed it as my vision improved along with general health for years.

A couple of years ago everything went downhill again including my vision. I've put this down to issues with OI, fluctuating blood sugar levels & variable hypertension. I'm much happier with glasses now, I wear them all the time, the prescription is to correct astigmatism.

Ryan

 

[Ysabelle-S]

Hi @Ysabelle-S,

Similar experience here. Good vision prior to illness, in my early 20s I started getting slight fuzziness when very tired or in PEM. I actually had an eye-test on a PEM day, my energy ran out and/or OI hit half way through the test and vision changed, confusing the optician I got a very small prescription but never needed it as my vision improved along with general health for years.

A couple of years ago everything went downhill again including my vision. I've put this down to issues with OI, fluctuating blood sugar levels & variable hypertension. I'm much happier with glasses now, I wear them all the time, the prescription is to correct astigmatism.

Ryan

Hello Ryan,

Yes, my eyesight improved too after the initial years. I still had worse days, but overall I didn't feel I needed them and I read a lot. I think now it's partly age-related, but PEM does affect them too, which means I'd have to rest and do nothing in the run up to an eye test.

 

[trishrhymes]

I have worn glasses for short sight and astigmatism for years. I hadn't had an eye test for 15 years until a few weeks ago (increasing long sight that happens with age seems to have counterbalanced my increasing short sight). I knew I would run out of energy and focus part way through a test, so I hadn't bothered to go.

I recently discovered a home optician service (I'm in the UK) which is available for disabled and over 60's. The optician came and did the tests, and a few weeks later the glasses were delivered.

I knew they weren't right after a few days of trying to wear them so I phoned and he came back and re-tested me and changed the prescription. He was really nice about it and there was no extra charge. I'm now waiting for the new version to arrive.

 

[Ysabelle-S]

I have worn glasses for short sight and astigmatism for years. I hadn't had an eye test for 15 years until a few weeks ago (increasing long sight that happens with age seems to have counterbalanced my increasing short sight). I knew I would run out of energy and focus part way through a test, so I hadn't bothered to go.

I recently discovered a home optician service (I'm in the UK) which is available for disabled and over 60's. The optician came and did the tests, and a few weeks later the glasses were delivered.

I knew they weren't right after a few days of trying to wear them so I phoned and he came back and re-tested me and changed the prescription. He was really nice about it and there was no extra charge. I'm now waiting for the new version to arrive.

Thanks Trish, I'll be interested to see how you get on with the new ones. I never got a pair that worked for me when I tried many years ago.

 

[Ysabelle-S]

I should add that I wondered if people got round the problem of ME-related variable eyesight with varifocals.

 

[slysaint]

Hi
@Ysabelle-S , also exactly the same problem with me, as well as the getting older bit. I know I should really go and get an eye test (to make sure there is nothing else going on) but I don't want to have to go thro the whole 'trying to explain' about the ME side of things.
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

 

[Ysabelle-S]

Hi
@Ysabelle-S , also exactly the same problem with me, as well as the getting older bit. I know I should really go and get an eye test (to make sure there is nothing else going on) but I don't want to have to go thro the whole 'trying to explain' about the ME side of things.
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

Hi there,

I get you on the nuisance of trying to explain ME because the last optician I saw was so dismissive when I told them about the variable eyesight - 'everyone's eyesight is variable' - that I never bothered seeing another one.

 

[trishrhymes]

I should add that I wondered if people got round the problem of ME-related variable eyesight with varifocals.

I have worn varifocals for many years. I use them because I'm short sighted - I started wearing them when I was still teaching and was forever swapping between two pairs of glasses to look up at the class, then down at my notes!

I'm not sure whether it would help with ME variation because they are designed so it's the right focus for whether you're looking up/ahead ie the upper part of the lens for distance, and if you're looking down for reading, eating, walking etc to see closer things clearly.

For me, the variation in my eyesight due to ME exhaustion is a general loss of ability to focus, whatever bit of my glasses I try to look through, rather than a specific change in my distance vision. But everyone's different.

Needing different pairs of glasses for TV and reading is common, not necessarily ME related, you may find bifocals or varifocals help with this.

 

[slysaint]

Needing different pairs of glasses for TV and reading is common, not necessarily ME related, you may find bifocals or varifocals help with this

I should have said, that I don't always stick to the same pair for a particular purpose due to the fluctuating nature of my eyesight, and also there are times when no glasses work.
Also that before ME my eyesight was tested regularly (paid for by the company I worked for) and I had near perfect eyesight.

 

[Dechi]

I have been near sighted since I was 8, and now I am also have astigmatism. I can't wear varifocals because they make me take serious falls and are too dangerous for me. So I wear glasses that are okay from seeing far away and ok for reading, but never great. I have started having problems of blurred vision, especially the first hour after waking up. This is difficult and I don't have a solution for it.

 

[Ysabelle-S]

I have been near sighted since I was 8, and now I am also have astigmatism. I can't wear varifocals because they make me take serious falls and are too dangerous for me. So I wear glasses that are okay from seeing far away and ok for reading, but never great. I have started having problems of blurred vision, especially the first hour after waking up. This is difficult and I don't have a solution for it.

Ah yes, I've had blurred vision after waking - I don't mean immediately and then going away, but lasting for a wee while after waking.

 

[slysaint]

I mentioned on another thread a while ago about something that can happen re my eyesight, but no-one else had tried it.
I find sometimes (can't seem to make it work on demand unfortunately) if I am bent over (not sitting but standing/partially squatting) and I concentrate on something on the ground in front of me my vision can come into quite clear focus. I wondered if this might be something to do with blood flow to the brain? I would be interested to hear if anyone else can 'do it'.

 

[Forbin]

I don't know if this would apply to you, but...

During an eye test, I don't believe you should be allowed to look through any one lens for more than a couple of seconds. The reason is that, given a few moments, your eye may be capable of compensating for the lens. A lens that had initially been blurry can suddenly look sharp. I think that's why they conduct the "better one... or two" test so rapidly.

This happened to me once. I'm nearsighted and I was being equivocal about the differences between lens powers during an exam. As a result, the optometrist was inadvertently allowing me to look through the lenses long enough to compensate for them. I kept saying that more and more powerful lenses looked "better," and I wound up with a prescription that was way too powerful.

When I got the glasses, my eyes could only compensate for the too powerful lenses for about two hours before they (temporarily) became "exhausted" and lost all ability to focus.

My original optometrist (who was fresh out of school) was at a loss to explain this. Fortunately, I decided to go see a seasoned ophthalmologist who figured out the problem right away and I got a proper prescription.

 

[Ysabelle-S]

I mentioned on another thread a while ago about something that can happen re my eyesight, but no-one else had tried it.
I find sometimes (can't seem to make it work on demand unfortunately) if I am bent over (not sitting but standing/partially squatting) and I concentrate on something on the ground in front of me my vision can come into quite clear focus. I wondered if this might be something to do with blood flow to the brain? I would be interested to hear if anyone else can 'do it'.

I will give that a try and get back to you.

 

[Ysabelle-S]

I don't know if this would apply to you, but...

During an eye test, I don't believe you should be allowed to look through any one lens for more than a couple of seconds. The reason is that, given a few moments, your eye may be capable of compensating for the lens. A lens that had initially been blurry can suddenly look sharp. I think that's why they conduct the "better one... or two" test so rapidly.

This happened to me once. I'm nearsighted and I was being equivocal about the differences between lens powers during an exam. As a result, the optometrist was inadvertently allowing me to look through the lenses long enough to compensate for them. I kept saying that more and more powerful lenses looked "better," and I wound up with a prescription that was way too powerful.

When I got the glasses, my eyes could only compensate for the too powerful lenses for about two hours before they (temporarily) became "exhausted" and lost all ability to focus.

My original optometrist (who was fresh out of school) was at a loss to explain this. Fortunately, I decided to go see a seasoned ophthalmologist who figured out the problem right away and I got a proper prescription.

That's interesting - will keep that in mind.

Colossus - that's a great sci-fi film. Recognised Forbin and your avatar pic immediately!

 

[halcyon]

Similar story here. I have astigmatism in one eye and probably could have gotten glasses several years before but I got by fine without them. After sudden viral onset ME, my vision seemed to worsen quite a bit, actually on the same day that my vestibular function was damaged. Optometrist didn't find any overt eye issues and I was given corrective lenses which helped immensely and I didn't have any trouble adjusting to them. I still get blurred vision on occasion, normally when I start to feel more sick, and I also will usually get a mild ptosis in the astigmatic eye by the end of the day. I'm completely reliant on the glasses now and I can't read the laptop screen without them.

 

[Hell...Hath...No...Fury..]

I have perfect vision on a good day and terrible during brain fog.

I told my optician that i need glasses for my brain :thumbdown:

At the start of an eye test; perfect vision. In the second half i need thick glasses

 

[charles shepherd]

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.


Visual symptoms that people with ME/CFS often report include:


•increased awareness or sensitivity to bright light

•visual or reading fatigue

•difficulty with focussing on images and following moving images

•vision related headaches after reading

•pain in or around the eye

•dry and/or itchy eyes - dry eye syndrome


From a research point of view, Dr Hutchinson has been carrying out a number of tests to see if these symptoms can be objectively measured and confirmed.


Using a group of people with ME/CFS, along with a control group, Dr Hutchinson described some of the investigations she has been carrying out to measure:


•cortical excitability

•visual attention and the ability to ignore irrelevant background information

•eye movement and the ability to track/follow objects


The results so far, some of which have been published, indicate that basic eye movements to simple static targets are less accurate in people with ME/CFS and that moving eyes for even short periods of time induces eye-movement fatigue. This type of opthalmological testing has helped to confirm that people with ME/CFS have a range of problems related to visual attention that are consistent with their self-reported symptoms.


•More information on this research can be found here:

http://www2.le.ac.uk/departments/psychology/ppl/ch190/CFS_ME


Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Ysabelle-S]

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.


Visual symptoms that people with ME/CFS often report include:


•increased awareness or sensitivity to bright light

•visual or reading fatigue

•difficulty with focussing on images and following moving images

•vision related headaches after reading

•pain in or around the eye

•dry and/or itchy eyes - dry eye syndrome


From a research point of view, Dr Hutchinson has been carrying out a number of tests to see if these symptoms can be objectively measured and confirmed.


Using a group of people with ME/CFS, along with a control group, Dr Hutchinson described some of the investigations she has been carrying out to measure:


•cortical excitability

•visual attention and the ability to ignore irrelevant background information

•eye movement and the ability to track/follow objects


The results so far, some of which have been published, indicate that basic eye movements to simple static targets are less accurate in people with ME/CFS and that moving eyes for even short periods of time induces eye-movement fatigue. This type of opthalmological testing has helped to confirm that people with ME/CFS have a range of problems related to visual attention that are consistent with their self-reported symptoms.


•More information on this research can be found here:

http://www2.le.ac.uk/departments/psychology/ppl/ch190/CFS_ME


Dr Charles Shepherd
Hon Medical Adviser, MEA

Thanks for that! Will check out the link.