u/esper_terra

Those of you who know your eyes don't close completely during sleep, how did you find out? Did you get someone to observe you while sleeping, or did you have a test done?

I have had chronic dry eyes for a long time that might be damaging my eyes and am trying to find the cause. I wake up with them extremely gritty, painful and hard to open. My optometrist said I definitely have signs of chronic dry eyes but suggested I try OTC drops and sent me on my way. So far they aren't helping.

If you have this issue what have you done to remedy it? Thank you.

I've had issues with dry eyes for years. My ENT suspected I had Sjogren's because I am dry everywhere and have joint pain. But a rheumatologist brushed me off when she found out I wore contacts. She said "you can't have Sjogrens and wear contacts" which I now know is BS. Yes I wear contacts but I do have issues wearing them quite often. I do have an autoimmune disease already and recently found out that I have strong genes towards autoimmunity and Sjogren's in particular.

My eyes tear, look inflamed at times and I seem to have new vessels forming. The worst is when I wake up from sleep, my eyes are painful, gritty and hard to keep open for awhile. I don't sleep in my contacts and I give my eyes breaks from them. I don't wear them all the time. I might be sleeping with my eyes not completely shut at night, but I am not sure. I may try a weighted mask.

Recently I saw a an eye doctor who told me that he can definitely see that I have chronic dry eye, but just gave me the names of couple of OTC drops to try and sent me on my way. I tried one of them and I don't feel any difference. I will try the other he suggested but if that doesn't work what then? Do I call him (optometrist) and ask to be seen further or do I ask for a referral to an Ophthalmologist?

I am worried because I feel like the chronic dry eyes are damaging my eyes. Fortunately the eye doctor said my corneas look good. What would be the next best step? I am not really one to be keen on getting prescriptions but in this case I am open to the possibility if it will ease inflammation or possible damage. Thanks.

Throughout my childhood I was active. But my muscles have always been weak. I struggled with riding a bike, running, I couldn’t do pull-ups even though the rest of my class could, I struggled with sit-ups and would release my bladder when I did them, couldn’t climb the rope in PE and couldn’t jump on a trampoline without releasing my bladder either. I also have had lifelong chronic constipation.

Fast forward to adulthood, I’m now 43. I’ve dealt with muscle weakness still for years but it seems to be getting progressively worse. I struggle with steps and hills, even just slight inclines. Getting off the floor is difficult because my knees and hips feel like they will give out sometimes and I also injure myself easily. One of my knees buckles frequently.

I also have a crooked/asymmetrical smile and can't open my mouth wide. An orthodontist once said my muscles go downward and be couldn't help me. I've had previous work done but it didn't help. It's gotten worse over time I think.

The other part of the story is that my mom had profound muscle weakness throughout her life and became disabled at a young age and bedridden quite quickly once she started injuring herself by falling. She passed away from ovarian cancer so I can’t genetically test her but now I wonder if she had a neuromuscular disease of some sort.

My question, does this sound neuromuscular, or like something else? What tests might you suggest with finding an answer?

*** I am seeing a neurologist with a sub specialty in neuromuscular disorders in July, not asking for a diagnosis here***

How can I prepare for my appointment? Should I bring a diary of symptoms? Photos from my childhood? (my muscles always looked skinny and weak), should I bring a list of symptoms? I'm worried about underpreparing but also over preparing. What do doctors like patients to do? Just talk?

I'm interesting in genetic screening as well, and am going to look into that, as I have had some genes come up for muscular dystrophy through my own research but they might be clinically irrelevant. Not sure. But don't most people who have muscular dystrophy get diagnosed during childhood or are in a wheelchair?

Thanks everyone for your input. The main reason why I'm searching for an answer right now is because I'm scared about my future mobility. Hopefully I can get some help with strengthening my muscles.

Info about me:

130 lbs 5'5 female

I eat mainly unprocessed foods, meat and low carb vegetables and berries, healthy fats.

Current main health issues:

Hashimotos, migraines, IBS-C, mild iron deficiency with anemia but hematologist says it would not be causing all of these issues I'm having

Had cardio workup and wore a monitor and they came back ok

Physical is up to date

Issue has been lifelong and getting progressively worse.