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My 7-year Journey to the Answer

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  • My 7-year Journey to the Answer

    Dear all,

    I feel called to share my story as I think it can help some people. This is a message about potentially having an underlying issue behind your dry eye and causing it. So if that speaks to you, read on….

    I have suffered with dry eyes for 7 years. Like many of you, I tried it all. Over a dozen doctors, warm compresses, lipiflow, scleral lenses, moisture chamber goggles, Restasis, oitment, steroids, anti-biotics, blood plasma drops, etc. Literally every one. I got zero relief from all of it. Each doctor gave up on me and sent me to the next one.

    Clues to a Larger Issue:
    About 4 years into all of this, I started to recognize that I might have a more complex issue going on. I was a workaholic, and when I finally let myself take a break I noticed EXTREME FATIGUE and FOGGINESS. Up to that point, I was so focused on my burning, red, painful eyes that I did not see it was linked to fatigue the whole time. I had told myself “everyone is tired, I’m just working hard.” For two weeks I decided to rest and I slept 11 hours a night and napped 2 hours every day. At the end of 2 weeks, I was not feeling any more rested. I was just as tired. Time to see a doctor.

    New Diagnosis:
    After a few appointments, I was diagnosed with Lyme Disease, a tick borne illness that causes many symptoms including fatigue. I spent 3 years trying to fix this complicated and controversial illness. I went from the mystery of dry eye to the mystery of Lyme. Again, nothing worked for 3 years.
    This could very well be what some of you have, as this can cause fatigue that would cause dry eye, but for me, it was a misdiagnosis.

    The Real Diagnosis:
    I finally decided to go to the Mayo Clinic (a phenomenal hospital) to get my entire body tested. After testing everything - my brain, auto immune, infectious disease, you name it.... I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. This is a neurological disorder where the body is stuck in “fight-or-flight” mode and causes your brain to send signals of fatigue and pain to the body in order to make sure you protect it. This can result from anything that causes worry, such as emotional or physical trauma, a constant state of stress, grief, shaming yourself, to name a few. You see, the nervous system only has 2 states, the sympathetic and para-sympathetic nervous systems. One is “rest and digest” and the other is “fight or flight.” Our bodies are designed to be in rest and digest, or a feeling of safety, almost all of the time. But when, for instance, a bear walks toward you, your body is able to instantly move into fight or flight mode. It is ready to survive at all costs. But since there are ONLY THESE 2 SYSTEMS, the body has will interpret ANY AND ALL feelings of worry the SAME WAY it interprets a bear in your presence. Meaning anything that worries you, from work, to arguments, to a lack of purpose in your life, will send you into the state of fight or flight. It goes into survival mode. Our bodies and our nervous systems are incredibly adaptive, meaning they will do whatever it takes to survive. If you are in this state constantly for years, the body will ADAPT FOR THAT ENVIRONMENT. It rewires the neural pathways so that you are ready for that attack. Just like gaining “muscle memory” when developing a skill like a sport, your body wires for what it is consistently asked of it. This is what happened to me. With stress, work, self-shaming, guilt, working out too much, and losing my father to cancer, I had created a hazardous environment that my body interpreted as danger. The modern world causes much more stress and shame than our bodies have evolved for.

    If you’re sitting there and this is resonating with your history, ask your body what else it is feeling. Because when your body is in this state, it can get hyper sensitive to everything around you (known as Central Sensitization). It could be bright light, noise, foods, smells. Dry eyes are one example of many.

    When I learned all of this, it all resonated. I learned that my dry eye was actually a FALSE SIGNAL my brain was sending to my body so that it would feel more tired so I would close my eyes and rest. My body thinks it’s in danger, and will need rest to survive.

    How to Treat this Disorder:
    It takes time. You must re-wire your body. How do you do that? Make it feel safe. Make it happy. Laughter, play, joy, spirituality. No more guilt, shame, resentment, stress. These are the answer that the best hospital in the world gave me. Also meditation and relaxation.

    Full Disclosure:
    I got diagnosed in April 2019. It is September 1, 2019. My fatigue is nearly gone. My fogginess is gone. I notice on stressful days my symptoms act up, and on days when I’m playing like a kid and having a blast, I never even think of my fatigue or a nap. My eyes follow suit. They are not all better, I’ll be honest, but they are getting there. They were the first symptom I ever noticed (by years), so I expect they will be the last to go.

    That’s my story, I hope it helps someone.

    A Side Note on Symptomatic Relief:
    For a time, the moisture chamber goggles helped, but that eventually stopped working.
    What did make me feel better was to be OUTSIDE. I noticed significant symptom reduction when I was in the natural light and air, instead of under man-made light and artificially circulated air. I don’t know the reason for this, but I recommend everyone try it. That means no glasses or sunglasses. That changes the refraction and amount of light into your eyes.
    Also, the iphone and computer killed my eyes, the less of that the better!

    - Luke

  • #2
    Did you continue to work throughout all of this. How did you cope?


    • #3
      I did work, on and off. I have a flexible job as a writer..... Coping was brutal. I was severely depressed for a long time and lost hope.... In hindsight I wish I had focused less on all the healing modalities and research and more on just being happy. This is not the answer everyone wants to hear, but finding spirituality and fun again showed me why I was suffering. My life was off track, and my poor health was my body's way of telling me it was unhappy.


      • #4
        I think you are perfectly right if comes about mental problems as a main cause of dry eye. I tried so many things as supplements, drops, warm compresses etc. as you. I even had long periods in my life when I ate only healthy food, worked out everyday, but I also looked at my past and noticed that I was very neurotic, introvert, asocial person with very big problems that go on until now.

        I'm going to earn money for psychotherapy or something like that because now, when I'm 23 I can't even take a job where it is necessary deal with other people (Noticed that whenever I think about contact with others, then I feel so stressed and tense, like with "fight or flight", my eyes also get really worse, although I want very much such contact - but my body does not let me)


        • #5
          Congrats on finally figuring it out. I feel for you. I have had dry eyes for over 20 years and have tried almost everything you have tried. Mine is due to ocular Rosecea (or so I am told). I don't think they really know. They are able to diagnose the symptoms of MGD and tears evaporating but there are a lot of potential causes. I have now started the new drug Xidra and it is working better than anything I have ever tried in the past. It wasn't on your list so I just thought I would pass the info along. It doesn't do anything for the bacteria though so I have also started doxycline. Anyway, I hope you continue to have success dealing with this horrible disease.


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