Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
One of the symptoms that suddenly emerged after I turned 40 was eye problems. Of course, this didn’t happen overnight, but the realization that something was wrong with my eyes did come suddenly. An eye condition felt scary to me and had a major impact on me.
In our modern age, where we can’t escape screens, our eyes have to endure a lot, and that’s why I thought my problems were due to too much screen time.
But with so many complaints related to Ehlers-Danlos syndrome, I couldn’t explain them anymore when they got worse. Dry and tired from too much screen time? Getting older? Or are my glasses no longer the right prescription? My eyes were tired, and I had increasing difficulty focusing.
As a result, it took longer and longer to switch from far to near, or vice versa. At first, it was a fraction of a second, impossible to grasp what was happening, just difficult and unpleasant.
Over time, it got worse and worse. It first became apparent in the car. When I switched between looking at the traffic and the dashboard, I couldn’t focus within the time it was safe to ignore the traffic, so I saw double the information on the dashboard.
At first, this was just annoying and troublesome, but I increasingly experienced double vision and my eyes became painful. The time when my eyes were simply tired became shorter, and pain quickly took its place.
So, I went to the optician to have my eyes tested. It quickly became clear that it took a very long time for my eyes to adapt, and in some situations, not at all. I was referred to my doctor, who quickly recognized that this was related to EDS.
My eye muscles became increasingly weaker, making it increasingly difficult to focus. My glasses can partially compensate for this, but it takes a few seconds between looking at things from a distance or up close before I no longer see double. The pain and fatigue in my eyes spread to my forehead and nasal cavity almost daily.
Many EDS patients report flare-ups of symptoms that herald a bad day or a bad period, with numerous EDS-related symptoms. I haven’t experienced this myself, although I certainly have and had good and bad periods, but these always came gradually, and the good periods were often more pronounced than the bad. Eye complaints, however, quickly herald a flare-up or bad period. Headaches and double vision, even when looking at a single point for a long time, are harbingers of general pain and malaise.
Seen in this light, the eyes are not only a gateway to the inner soul but also to the inner body.
Living with Ehlers Danlos Syndrome 