Is exophoria a ME CFS symptom?

ChookityPop

Senior Member
Messages
442
Likes
535
I was diagnosed with exophoria back in 2015. But the Dr said I didnt need glasses cause since it was so mild.

I had two months in 2016 Where I had excruciating pain in my eyes/eye muscles. I had to live in a dark apartment for almost two months. I couldnt look at screens. It instantly hurt like crazy in the muscles behind my eyes. It was Sharp/cutting pain.

After two months I went to an Expert on exophoria and the use of prism glasses etc. he said my eyes was very bad and I needed prisms asap. It helped tremendously But after my relapse in 2019 I couldnt use them anymore. It was like my eyemuscles couldnt handle it.

So since then I have droppes the glasses and it has been all good without them. I just have to stop reading etc when I feel pain coming, But I had to do that when using glasses as well..



I habe never had eye issues Prior to getting sick in 2014 when all of a sudden I had really blurry vision.

When I Google it seems its kind of common in ME Patients?

Anyone else?

The best thing I can do for my eyes is looking around outside. I have PEM for a little over a week now and I have a blurry vision, brainfog(which I almost never have had the last few years) and low energy.

When I get tired like this it affects my eyes. So it feels lile a muscle problem..

Since getting sick I cant watch tv or iphone when I lay on the side, that messes my eyes up.
 
Last edited:

Pyrrhus

Senior Member
Messages
2,957
Likes
8,715
Location
U.S., Earth
Messages
61
Likes
196
I have vision problems that seem to correspond with episodes of PEM, and I'm pretty sure they'd be best characterized as accomodative spasm. I actually had this before getting ME/CFS, but it was very mild, and I never sought any sort of treatment for it. It's worse these days, but it's not at the top of my list of things to fix, especially since it's no issue if I can avoid PEM.

Surprisingly (or at least it was a surprise to me), exophoria is common in some forms of dysautonomia, even though eye muscles are considered part of the somatic nervous system. So it seems to make sense that exophoria could show up in the autonomic problems associated with ME/CFS.
 

Pyrrhus

Senior Member
Messages
2,957
Likes
8,715
Location
U.S., Earth
Surprisingly (or at least it was a surprise to me), exophoria is common in some forms of dysautonomia
That's an interesting paper, thank you for sharing it.

The thinning of the retinal nerve fiber layer concerns me, as that might predispose people to macular degeneration later in life.

Also note that thinning of the retinal nerve fiber layer has been documented in fibromyalgia:
https://forums.phoenixrising.me/thr...-of-fibromyalgia-patients.61667/#post-2321474
 

Azayliah

Senior Member
Messages
101
Likes
340
Location
USA
I think I may have exphoria, but if so it started a long time ago. After ME/CFS onset I began experiencing double vision (when I'm tired my eyes don't want to work together so well, but also it seems I have double vision in each eye), blurry vision, and a number of other visual issues. The double vision is a bigger issue for me, but the blurring has definitely increased quite a bit recently. I'm not sure if it's only PEM-related.

I am experiencing a bad blur day now and can see clearly within about a 10-20 inch range of distance from my eyes; with my glasses, that increases to about 10-50 inches. That seems like the usual range, but today anything closer or further is not just blurry but painful to look at. Closing one eye helps. Looking at motion is disorienting, so I'm listening to audio instead of watching TV, and typing with my eyes closed. Laying on my back or stomach helps, but looking at things when laying sideways is painful (I'm too tired to focus visually, and whichever eyeball is lower will simply give up and drift downward). Keeping the lights dim is also helpful.
 

Azayliah

Senior Member
Messages
101
Likes
340
Location
USA
I think a lot of people can relate to what you describe. Diplopia (double vision) was described in the original 1959 papers that first described ME.
I should clarify that I could experience a kind of double vision before ME/CFS, but it was something I could induce by staring in a way that made my eyes drift in opposite directions. But when I started the ME/CFS and FM symptoms I had double vision that hiked up to truly nauseating levels, and I can honestly say that I really didn't know how disabling double-vision could be before that. I am grateful that it comes and goes (especially that it goes) for me, and I feel very sorry for anyone who has to experience it for long stretches of time.
 

ChookityPop

Senior Member
Messages
442
Likes
535
I have very blurry vision but not the exophoria (had to look it up). (eyes drifting outward)

I can't lie on my side and watch screens, either. Really straining.

Two eye doctors I got no help.
Interesting that you also have trouble laying on your side watching screens.

Does your blurry vision improve at times or is it constant? My eyes really like to watch stuff outside at long distances and be outside in general.

I would recommend seeing an (in norway we call them samsynekspert), I cant find the english word for samsyn. He saw how much trouble I had with my eyes. He told me that I never could read again in my life and I would only be able to watch screens at short periods. But I was able to watch plenty of screens in the beginning and even now though I at times struggle, like now for instance.

He meant I had struggled with this my whole life. That the muscles behind my eyes is constantly working overtime to correct the exophoria.
But now I wonder if it just is because of the muscle fatigue from being sick that does this. All that being said I had to stop using prism glasses because it actually started to strain my eyes more than not using them after my relapse in 2019.


This is directly translated from google translate about samsyn:

"
Consensus is that visual impressions from both eyes are simultaneously registered in the brain's visual center. There are three degrees of consensus:

The weakest is simultaneous perception, which means that the image from both eyes is seen simultaneously.
If the images of the two eyes merge into a common experience, there is a fusion.
If you also experience that there is a depth in the image, you have the highest degree of consensus, stereoscopic vision (stereopsis)."
 

ChookityPop

Senior Member
Messages
442
Likes
535
I have vision problems that seem to correspond with episodes of PEM, and I'm pretty sure they'd be best characterized as accomodative spasm. I actually had this before getting ME/CFS, but it was very mild, and I never sought any sort of treatment for it. It's worse these days, but it's not at the top of my list of things to fix, especially since it's no issue if I can avoid PEM.

Surprisingly (or at least it was a surprise to me), exophoria is common in some forms of dysautonomia, even though eye muscles are considered part of the somatic nervous system. So it seems to make sense that exophoria could show up in the autonomic problems associated with ME/CFS.
Thanks for sharing, very interesting the connection with dysautonomia. That fits me very well as Im certain I have dysautonomia.

Is accomodative spasm when you for example look at your phone for a long time and when lay it down your eye sight is blurred and has trouble looking at things further away etc? I have this.
 

ChookityPop

Senior Member
Messages
442
Likes
535
That's an interesting paper, thank you for sharing it.

The thinning of the retinal nerve fiber layer concerns me, as that might predispose people to macular degeneration later in life.

Also note that thinning of the retinal nerve fiber layer has been documented in fibromyalgia:
https://forums.phoenixrising.me/thr...-of-fibromyalgia-patients.61667/#post-2321474
Thats a little concerning I agree. Is the thinning of the retinal nerve fiber layer a sign of SFN or polyneuropathy you think?

I wonder if there is some peptides or peptide eyedrops that could help with this.

When my eyes are really strainy it helps with low dose cannabis.
 
Messages
61
Likes
196
Is accomodative spasm when you for example look at your phone for a long time and when lay it down your eye sight is blurred and has trouble looking at things further away etc? I have this.
That's pretty much it. If you see an optometrist they may think you have myopia, since your vision gets better during a spasm with concave lenses.

The ciliary muscles that control accommodation are under autonomic control, so it makes sense in the context of dysautonomia. In my case, I have small fiber neuropathy. The fact that my accommodative spasm occurred years prior to my ME/CFS and the more obvious symptoms of my SFN makes me wonder whether these were beginning in some hardly noticeable, subclinical form early on. I had a lot of GI issues during that time as well. I wish there was more research into 'prodromal' ME/CFS or dysautonomia.
 

ChookityPop

Senior Member
Messages
442
Likes
535
That's pretty much it. If you see an optometrist they may think you have myopia, since your vision gets better during a spasm with concave lenses.

The ciliary muscles that control accommodation are under autonomic control, so it makes sense in the context of dysautonomia. In my case, I have small fiber neuropathy. The fact that my accommodative spasm occurred years prior to my ME/CFS and the more obvious symptoms of my SFN makes me wonder whether these were beginning in some hardly noticeable, subclinical form early on. I had a lot of GI issues during that time as well. I wish there was more research into 'prodromal' ME/CFS or dysautonomia.
Very interesting! I love learning new stuff like this thats fits my illness.
Accommodative spasm is one of the first symptoms I had, so that could mean I have had dysautonomia since 2014. Amd maybe longer than that? I also use to have these pink spots at the tip of my eye lids which also is something new after I got sick. I just throw that out there in case some of you knows somthing about it, it could be totally unrelated to everything ofc.
 
Last edited:
Messages
61
Likes
196
@Pyrrhus @katabasis
Do you know who diagnoses retinal nerve fiber layer thinning?
I'd assume that your best shot would be an ophthalmologist. However, it's definitely not something that they'd catch on a standard ophthalmic eye exam. I think something like optical coherence tomography would catch it but that's usually part of the work-up for some already-established eye disease like glaucoma.

So, you'd probably need to go in with some sort of reason why you suspect that you have retinal nerve fiber layer (RNFL) thinning as opposed to some other eye problem (e.g. you have a dysautonomia diagnosis), and then more importantly, you'd need to explain how the test's results would be actionable. Even if you find out you have RNFL thinning, if it doesn't change your treatment plan overall, then usually (in my experience of asking for obscure tests in general), doctors will balk at doing the test.

I can appreciate wanting to know every detail of how your body might be malfunctioning; I have that same exact desire, most of the time. But if you can identify what condition (presumably dysautonomia or some kind of other neuropathy) could be causing the RNFL thinning, then hopefully you can treat that underlying cause and see some improvement without going through the effort of proving anything concretely.
 

ChookityPop

Senior Member
Messages
442
Likes
535
I'd assume that your best shot would be an ophthalmologist. However, it's definitely not something that they'd catch on a standard ophthalmic eye exam. I think something like optical coherence tomography would catch it but that's usually part of the work-up for some already-established eye disease like glaucoma.

So, you'd probably need to go in with some sort of reason why you suspect that you have retinal nerve fiber layer (RNFL) thinning as opposed to some other eye problem (e.g. you have a dysautonomia diagnosis), and then more importantly, you'd need to explain how the test's results would be actionable. Even if you find out you have RNFL thinning, if it doesn't change your treatment plan overall, then usually (in my experience of asking for obscure tests in general), doctors will balk at doing the test.

I can appreciate wanting to know every detail of how your body might be malfunctioning; I have that same exact desire, most of the time. But if you can identify what condition (presumably dysautonomia or some kind of other neuropathy) could be causing the RNFL thinning, then hopefully you can treat that underlying cause and see some improvement without going through the effort of proving anything concretely.
I was wondering if RNFL was something that could be detected relatively easily and if so I could have approached it simultainiously as the other things im doing. But that sounds difficult to get done.

Its better to identify and treat the underlying condition as you say.
 

ChookityPop

Senior Member
Messages
442
Likes
535
People with ME have all sorts of vision problems due to dysautonomia.

Note that these vision problems have nothing to do with the eyes- they have to do with the nerves that control the eyes.

Hope this helps.
I guess its a long stretch, but does that mean vision problems in ME is neuoropathic? Since it has to do with the nerves.