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.
- 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
- 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.