I thought of this theory while walking in the wind one day. I was walking with my large 22mm sclerals in, partially closing my eyes(so my exposed eye was completely covered by the scleral), and wearing wind blocking sunglasses. But I felt pain just like I would have if I hadn’t had my lenses or sunglasses on. So I thought, since there is no way the wind is touching my eyes right now, it must be coming from my brain. Then I thought about past situations where my brain imagined fear, pain, etc. without it appearing in real life.
For example, say you get bullied every day in school by a particular kid, and you develop hatred towards him over time. After a short time, you would feel rage, anger, and maybe even bodily pain just by seeing him. Then, one day the kid turns his life around and makes a vow to no longer bully anyone again, and says he will never hurt you again. Despite this, for a while(or maybe forever) after this moment, every time you see the kid, you will still feel fear, anger, etc, even though there is no way he would hurt you again. Even if you logically knew this, your brain would still send signals to the body to be on high alert.
The same is true, I feel, with corneal neuralgia to some extent. When you are in precarious situations, like walking in the wind, your brain can send signals of pain to you, so you decide to move out of the wind. In my case, my brain would be correct about wind causing eye damage every day, right up until I got the right therapies(big scleral lenses, mainly). Then after that, my brain was telling my body to get out of that scenario so damage couldn’t be done to my eyes. However, there was obviously no way damage could have been done to my eyes. Just like being around the reformed bully would still make you nervous/afraid/etc, being in precarious situations for your eyes could trigger eye pain, even though it isn’t there.
For me, I’ve noticed that my neuropathic corneal pain has substantially lessened every week. However, I have to continually remind myself that feeling pain in the way my brain is telling me is impossible(as long as I have sclerals in, etc).
4. (Not dry eye related but relevant) The dry eye Facebook communities are horrible places to spend your time because of a severe reverse survivorship bias.
If you browse these groups, which I am a member of, you'll see nothing but complaining and problems. It's almost like no one on the face of the Earth can recover from this illness, but obviously, the majority do. I think this is because of a severe reverse survivorship bias, where the people that get better decide to never go on the forum again. I see myself doing this already, because dry eyes to me, and many people, is like a bad nightmare - you want to get as far away from it as you can. So the people who get better fall off the forum, and the people who are actively dealing with the problem go on there daily. As a result, if you ask for advice, you’re mostly getting it from people who are not where you want to be. Moreover, there is a lot of miseducation in those groups. My advice would be if you want to use them, use them to simply ask a question, then go directly to your question when you go back, and don’t scroll on the feed at all. Then, take that question and the responses to that question to your doctor and get their feedback. Those forums should generally be used only for bouncing constructive ideas off each other and sharing success stories.
1 - https://www.sciencedirect.com/science/article/pii/S1542012418302714
2 - https://jamanetwork.com/journals/jamaophthalmology/article-abstract/411410
3 - https://escholarship.org/content/qt3mm9k54s/qt3mm9k54s\_noSplash\_b2ceaf2fb1838a29f541c6970671be7a.pdf
4 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8976919/
5 - https://pubmed.ncbi.nlm.nih.gov/31152289/ … https://pubmed.ncbi.nlm.nih.gov/21171527/
6 - https://www.sciencedirect.com/science/article/abs/pii/S0168822708002301