I have my share of ocular issues, as all 4 of my diseases can affect the eyes.  My eye problems are one of the things which make me the most anxious – vision is so fundamentally important the thought of anything happening to it terrifies me (not least because I’d be unable to drive, and as I live alone, we have zero public transport here and are so remote that using taxis is prohibitively expensive, that would render me totally housebound and virtually unable to function).

  • When I first wake in a morning I am quite light-sensitive.  I have flashes and spots of light in my vision, just like when you look at a light-bulb then look away.  It lasts about 90 minutes but thankfully does settle down.  When I was bedridden with M.E. I was much, much more light-sensitive, often lay in a darkened room and couldn’t go outside without wearing sunglasses.  Even with my eyes closed I had constant explosions of light in my vision, like being at a permanent firework display – it was truly horrendous. I hope the fact this has improved dramatically gives hope to other M.E. sufferers who are currently very affected by light sensitivity.
  • I have severe floaters.  I’m only in my forties, yet these are now so bad they seriously affect my vision particularly in my right eye.  I don’t tell medical staff how bad they are as I’m terrified they’ll take away my driving license, however I think my optometrist has guessed as the shadow one of the floaters casts over my vision showed up on a recent eye x-ray and even she said “gosh, I bet that’s annoying” (under-statement of the century!).  Using the computer, and reading, is now a daily battle and I do worry what the future will hold if they continue to worsen as there is no non-surgical treatment for floaters (unless you have £2,500 to have laser treatment, which sadly I do not, and in any event I don’t know if it would be contra-indicated in Ehlers-Danlos as surgery on the sclera is).  There are days when my floaters seriously get me down.
Photo of eye floaters

This is approximately how my right eye sees the world (click on image to enlarge). It’s particularly bad when viewing white backgrounds, ie reading a book or looking at a computer screen. Imagine trying to read a passage of text through this lot – not easy!

  • Visual ‘snow’.  In addition to the floaters, which cause patches of blurred, black, vision, I also have what’s termed visual ‘snow’ in the parts of my vision not covered by the floaters, ie my vision is kind’ve grainy like I have very fine white snow constantly falling in vertical lines.  Thankfully, for the most part, I can just ignore this, but coupled with the floaters clear eye-sight is a thing of the long distant past.
  • Dry eyes.  I’d love to wear contact lenses but a trial of the softest, most moist, lenses (the kind you’re supposed to be able to sleep in) made my eyes pink like a pig within an hour 😦  I was gutted, as they made my vision crystal clear – it was almost like having my twenty year old eyes back again.  Having dry eyes also makes my eyes really sore, like they’re constantly full of grit.  I’ve now had a mast cell reaction to 3 different types of eye drops though so it’s yet another annoying symptom I just have to live with.
  • My eyes are no longer pretty.  I know this is absolutely trivial, but I used to think my eyes were one of my best features.  Now many of my capillaries are visible, I’m assuming due to thin sclera, and my eyes look permanently bloodshot.  When I was a child I used to look at veiny old people’s eyes and think “yuk”!  I now think the same thing about my own :-/

Photo of visible eye veins

  • Like most people with both M.E. and EDS I have a daily battle with accommodation, ie how well the eye focuses.  I can’t just flick between looking at the TV and reading the TV guide – one requires distance accommodation, the other close-up accommodation, and my eyes really struggle to adjust ending up making both blurry.  This, again, can have implications for things like driving where one minute you’re watching the road in the distance, and the next looking at the speedo close-up (which ends up just a blurry blob!).  To make matters worse, I’m now middle-aged and in the last 2 years have needed both distance and reading glasses.  My specs are on and off more times than a bride’s nightie (I was advised not to get varifocals due to my dizziness and balance problems) and drive me absolutely nuts!
  • Arcus Senilis, which means I have a ring of fat around my iris.  My optician discovered this last year and it’s usually reserved for the over 60s.  In people my age it is often due to cholesterol, so I was advised to have mine checked.  Thankfully my cholesterol is fine at 3.5, so I’m not sure why I have early arcus.  Mast cell disease can affect lipid production though, so I’m wondering if there is a connection.
  • Information processing.  OK, so this is more a brain issue than an actual eye issue, but I still find it affects my eyes quite significantly.  I can’t watch fast moving scenes on the TV, eg. the Tour De France cycling, or adverts with moving cars in, or scenes where they flick images quickly one after the other, or any scenes with flashing light bulbs.  It does my brain in, and leaves me with the room spinning and a serious case of motion sickness.  I’ve learned to just close my eyes and wait for the scene to be over with.  Bizarrely, this doesn’t happen when I’m driving – not sure why not but I’m truly thankful, because if it did driving would be out of the question (cruising along the motorway with your eyes shut is not to be recommended 😉 ).
  • Pain & strain.  Trying to see through the permanent fog of my floaters gives me some serious eye strain, which can cause migraine in and of itself (I get right-sided migraines, and it’s my right eye that has the most severe floaters).  My migraines also cause significant eye pain, sometimes quite acutely actually in my eye, other times more a throbbing above my eye and in my temple.  My problems with accommodation also produce eye strain, as well as giving me thumping headaches as my brain tries to decide what it’s supposed to be focusing on.

Who knows which disease is causing which eye issue, I’ve given up trying to work it out.  Both M.E. and EDS affect muscle strength, which in turn affects accommodation.  Dysautonomia, MCAD, EDS and M.E. all affect vein pressure which will have obvious implications for the eyes.  MCAD causes inflammation, which again is bound to affect eyes, and has also given me adult onset pollen allergies with hayfever symptoms which again target my eyes.  Add to that the natural aging process and my poor little peepers don’t stand a chance.

As for treatment, I was hoping trying an H1 anti-histamine might help with the dry eye issue but it didn’t happen.  I also can’t find an eye drop I don’t react to.  Not tolerating drugs makes virtually all my symptoms almost impossible to treat.

Diana Driscoll is both a qualified doctor and therapeutic optometrist based in America.  She is also ill herself with a variety of issues including MCAD and has been researching this, CFS, EDS and other diseases for several years.  She has recently produced a short book on eye issues in connective tissue disorders (which also covers MCAD) which is available via Kindle on Amazon.

12 thoughts on “Eyes

  1. E. Milo

    Hallelujah! I don’t mean to be excited about your eye problems, but I have so many of the same issues, all brand new after I got sick. I’m in the middle of writing a blog now about it and have three close-up eye pictures. 🙂
    I must say, your eye looks pretty clear and white to me!


  2. maraplanter

    Most browsers have ways to customize their display to help people with vision problems:

    (blue on blue – hard to read, very ironic)

    Hopefully you’re not spending too much time in front of the computer – I hear it’s bad for your eyes. 😉


  3. Steve

    I too have many (if not all) of these symptoms. Sometimes I just blur my eyes on purpose to remind myself what vision was like before floaters… T___T


    1. bertieandme Post author

      I know, in the scheme of things, floaters aren’t really a big deal. But for me they are one of my most frustrating, annoying, irritating symptoms and really affect my quality of life! I can’t believe doctors haven’t come up with a treatment before now – seems to me to be a simple thing to be able to cure.


  4. Kyle

    Your eye looks just like mine — it is very hard to get used to. It’s taken a year for me to gather the courage to look people in the eyes. No one can see it but us – that’s what we’ve gotta keep telling ourselves. Best of luck with any future eye issues.

    Liked by 1 person

  5. gillsnatter

    Hey it’s me again – having a look around and see your eye issues. Me too – severe floaters, central vision affected, both eyes, been messed about since Feb this year and still no hospital appointment (long story). Majorly affecting work. Was seen at hospital a few years ago but now my optician is all ‘I’m not calling them floaters anymore, they’re huge!’ So anyway…. it is odd we have a lot the same… time will out it all for me, I’m sure.
    But that aside – could I ask a question about EDS here? I had a blood test I hadn’t seen before on previous GP blood results, called Connective Tissue Disease Abs – and as that is negative (0.2), will they argue with me that it can’t be EDS as that is connective tissue?? Have you heard of that test? Or is that literally for ONLY Mixed connective tissue disease – and therefore irrelevant…It’s my only doubt – and any doubt does send me into apology mode with medical people – afraid they’ll laugh at me! Also my cholesterol level has been forgotten about along the way – it was 6.2 a couple of times back 2 and 3 years ago, and once before was 7 something. It’s not been checked again – and no one brings it up. I feel like I’m so let down and have every reason to be my own advocate – but what a fight it is! Groan!! #justwantmylifeback….


    1. Jak Post author


      Bare in mind I’m not any kind of expert, just a patient, but here’s my take on your question. Mixed Connective Tissue Diseases (MCTD) are a group of inflammatory auto-immune disorders. They include things like Lupus, Sjorgren’s and Rheumatiod Arthritis, where the immune system attacks and inflammes perfectly healthy organs and tissue for no good reason. There are various blood tests which can point towards an inflammatory MCTD, although no specific test to identify them.

      EDS is not an auto-immune disease – it’s a genetic disease where from the day we’re born our collagen is “built” differently to health people’s. Although we do suffer from inflammation, it’s often as a result of injury to our weak tissues – our immune systems are working perfectly normally, as inflammation is produced as a protective mechanism when anyone gets injured. There is no blood test for EDS, particularly not the hypermobile type of EDS. There are gene tests for vascular and other types of EDS, although the gene test for Classical EDS isn’t particularly accurate. So, no, your negative Connective Tissue Disease test wouldn’t rule out EDS.

      Re cholesterol: this is largely genetic and quite common. High cholesterol isn’t part of EDS. I have high cholesterol but it runs in my family. Just so happens that so does EDS! However, high cholesterol can point towards other diseases, eg Cushings Syndrome & thyroid disorders, so it might be worth mentioning to your next consultant. Or if you know your family history might be worth checking whether any relatives also have high cholesterol, then you’d know whether it was simply a genetic thing.

      Hope that helps.
      Jak x


      1. gillsnatter

        That’s okay, I realise you’re a patient and all that, and I wouldn’t usually reach out so candidly but I’ve been quite overwhelmed I think! Thank you again for your insight. I’m hoping to get things underway tomorrow via my GP. Lots of love. I hope you’ve had a good day (considering).


    1. Jak Post author

      I’m so sorry Eric, but I have over 400 visitors to my blog every single day and am too unwell to take part in individual correspondance. I hope you understand. Jak



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