Getting Glasses When You Have ME-related Variable Eyesight

When I first fell ill with the original virus, my eyesight seemed to coincidentally get worse. I had to go to the optician who prescribed reading glasses that were horrendous to use. The next optician I visited a couple of years later thought they were way too strong for me. But I did have problems with blurred eyesight early on, and it was variable. The second optician a couple of years later also prescribed a pair of glasses I couldn't use. And one of the opticians I saw was very dismissive of the variable eyesight issues in ME, just saying that everyone has variable eyesight. I decided to forget about reading glasses, and fortunately my eyesight improved.

However, in the longer term, eyesight always deteriorates with age, so at some point I'll need to do something about it. I know some of you have different strengths of reading glasses and you just choose the strength you need at any one time.

If anyone has anything to contribute on the blurred and/or variable eyesight, feel free to post here. It does seem to be common enough for research to have been done - I think we're supposed to have problems with tracking lines in books, amongst other things.

Obviously seeing an optician every few years is advisable because it can pick up on other medical issues too.

 

I've been wearing glasses since I was eight, and they started calling me prof at school. Short sight. Initially I was unusual having the same prescription for each eye and no astigmatism. Both of those things have changed over the years. I don't think this has been significantly affected by ME but getting out little means I am never looking at infinity.

I had three pairs made up after my last test - close reading, computer 1.5 metres and distance. The latter scarcely get used now and most of the time I wear the middle pair. I am overdue for a new test.

I didn't get on very well with varifocals but I do appreciate the advantages. The big problem is when reading, especially a newspaper. With reading glasses I can scan the page moving only my eyes, but having only a limited sweet spot in the varifocals I found I had to move my head and that could be tiring when bad. Shortly after I got the varifocals I got new reading glasses as well.

 

My vision has changed very little over the years, and with respect to needing glasses for reading, my eyes are more like someone in their 40's than in their 60's. However, accommodation as @Trish described above is a huge problem. If I've read during a long wait before an appointment, everything looks blurry on the way home, and it takes several hours for my vision to return to normal.

Post ME, blurry vision has always been one of the first indications I've done/am doing too much. I've learned to aggressively rest for up to a week before getting my eyes tested for new lenses. Otherwise, the vision test is inaccurate, and my new glasses a waste of money.

One thing I have wondered . . . does anyone else experience what my husband calls "ding-dong" eyes? Apparently when looking at him, my eyes rapidly move from side to side -- something he says he's never seen in anyone else. I've certainly never seen it in him (unless he's demonstrating the effect). Although he considers it "cute" and just a part of me, I can't imagine how I must look to others.

 

Does this mean that I've only got a few weeks left before it happens to me?

 

Is this some modern substitute for sheep?

 

Sounds like nystagmus?

 

Everyone who's voted so far has developed eyesight problems.

 

I believe you're right, @Scarecrow . Thanks. I did a search for "nystagmus and CFS" and here's what I found:

http://www.anapsid.org/cnd/diagnosis/eye.html (Chronic Neuroimmune Diseases - Keep your Eyes on . . . ME/CFS)

http://www.ncf-net.org/forum/eyesofME.html

http://www.investinme.org/Article422 Grey Information about ME CFS.htm ("Grey" Information about ME/CFS - mentions nystagmus together with vestibular disturbance)

Blurred vision is also mentioned as per the OP's poll question.

 

I haven't developed any problems with my eyesight over most of my 18/19 years with ME, until very recently (apart from the usual deterioration that comes with growing old, but actually benefits people who are short-sighted). But then, my testosterone has dropped a lot. So until I get that sorted, I have no idea whether the ME is a factor or not.

 

Yes, however, I think in my case it is age related and most definitely computer related. I don't think that ME has anything to do with my blurry eyesight. Most of the blame there lies with the internet and ME forums and FB.

 

Oh goodness, where to start... I'd argue visual stress/deficiencies/agitation/processing problems are likely the biggest contributor to PEM for me. I have over 8 unique symptoms when it comes to visual processing. It even seems to effect my perception of sound. Since getting CFS, this has definitely become worse, particularly for blurring eyesight. I honestly don't know enough about how it's all connected.

 

Oscillopsia (bouncing or jiggling of the vision) , that's the bunny, never met anyone, including doctors or opticians who had the faintest idea what I was talking about with that.

Also blurred vision, variable.

Inability to track or sometimes even see moving objects, blurring of moving objects/text, even when my vision is not otherwise blurry.

Occasionally going "blind", no idea what that's about, it just dawns on me that I can't actually see anything, and haven't done for a "while". No sudden OMG I can't see, just a gradual realisation.

Other things, other bizarre things. Seriously odd

edit - ah, may have answered the wrong question here

 

Thank you. That's the one.

I have a 'memory' like that but always thought it was a dream. Maybe, maybe not.

 

I only feel blind if I go outside without sunglasses on. It's just an absolute mess of white light and images I can't take in. (Only in the daytime of course! If I do it at night time, then that's just me being pretentious )

 

When "blind" I can see edges, of moving things only, no colour, it's all black*, no shades, but somehow I can perceive the movement, and to a limited degree, the shape, until the object, normally a person/people or a vehicle, stops moving. Doesn't work with stuff moving on a tv, it's only real things. It registers as vision, but as I say I have no idea why, there is nothing there to classify has having seen something.

I did say bizarre didn't I

There's other things occur on occasion, but not sure how to describe them.

*edit - not the black you'd get if you were in a very dark place, down a mine say (been there lol), that has colour, your eyes make colour, little bits of it, if there is no incoming signal, this is black black - nothing.

 

@Wonko Goodness, that must be so bizarre to experience!

 

It's just...erm.....impatience turning to concern, the longer it lasts, it rarely lasts longer than a few minutes subjectively, but a few minutes outside, in a busy town centre, when not used to it is...fun.

I don't seem to react the way most people do to things, I never have, it's only since I started having to try and explain things to people like the DWP that anything got mentioned at all, I've always just accepted that things are the way they are, from moment to moment, that I am me, and when interesting things happen I'm much more likely to stop and observe/study them than panic or worry, although eventually anger/frustration etc. can make an appearance if I get stalled too long. Apparently most people don't react this way.

edit - but this is now getting seriously OT - at some point I may start a Wonko's a bit Weird thread for all this stuff. lol