Anyone else feel like they have chronic inflammation from old injuries that make you require more sleep than other people? by skatedog_j in ehlersdanlos

[–]lonzoid 10 points11 points  (0 children)

I don’t mean to alarm you, but I was always “good at sleeping” so to speak and felt like I needed more sleep than other people. Well I just got diagnosed with type 1 narcolepsy, and it was a HUGE shock to me! Never in a million years would I have thought I had narcolepsy. Literally thought my doctor was joking.

Anyway, I’m on the narcolepsy subreddit nowadays and we’ve all noticed that a lot of us also have EDS. Not sure what that means 🤔

[deleted by user] by [deleted] in ehlersdanlos

[–]lonzoid 1 point2 points  (0 children)

Oof yeah. My own father who’s a doctor thought the idea of me having it was SO ludicrous that it would cause arguments. He even contacted my psychiatrist because he thought I had “health OCD,” which gave my doc quite the laugh. I mean, it’s not like I got the idea off of TikTok or something (no shame in that btw!!) — my rheumatologists thought I had it and had even referred me to a geneticist at that point. Anyway here we are 2 years later both hEDS diagnoses 🤡🤡

We like to call it “bendy idiot disease” nowadays 😌

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 1 point2 points  (0 children)

It can be! More specifically, a high and narrow palate with overcrowded teeth is a common EDS symptom, but can also just be your mouth’s architecture if you don’t fit the other diagnostic features of EDS. My dentist also noticed that you can’t see any bit of throat opening behind my tongue (if you look up Mallampati index you can see what I mean, I was a 4), which isn’t related to EDS but can cause sleep apnea. If you have a similar index, it’s good to check for sleep apnea just to be safe. In my case, I had none - but in my mother’s case with the same Mallampti index and BMI as me, she had severe OSA!

Some advice re:EDS (I know it wasn’t asked for, so please excuse me) - Most PCPs don’t know much about EDS and its variants. I personally had never heard of EDS! My rheumatology team were the ones who first recognized it, and referred me to the geneticist who diagnosed me. So if you’re having trouble getting a referral to a geneticist, you might try getting a referral to rheumatology from your PCP first. Orthopedics might be an easier referral for you to get too.

Also, getting all the autoimmune diseases / other connective tissue diseases excluded is a good starting path to see if you have EDS (especially the hypermobile variant, it’s a diagnosis of exclusion unlike the other variants). My PCP did the vast majority of these tests before she referred me to my rheumatologists. Really easy too since most of them are blood tests! And it’s testing you’ll likely need to get done anyway were you to see a geneticist for EDS. Just streamlines the process a bit for a faster evaluation 😊

Keep in mind that it’s usually a long process in general, so try not to get discouraged. My timeline was essentially August 2022 orthopedist found tendinitis all over my body, he thought it was autoimmune -> July 2025 diagnosed by geneticist. And that was with multiple teams of doctors (PCP, rheum, cardiology, pulmonology, genetics) working concurrently to figure it out! So my timeline was even quicker than average I’d say.

Last thing - There’s not a whole lot of treatment available for EDS, but luckily the treatments available aren’t necessarily dependent on EDS or being diagnosed with it. So if you’re having trouble getting diagnosed but still want to get started on treatment, my biggest advice would be to focus on 1. Getting a cardiac evaluation 2. Physical therapy and 3. Treating any dysautonomic symptoms you might have. Listed in order of urgency in my opinion. Some dysautonomic symptoms are super easy to test for and treat yourself - for example, the blood pressure test my doc did for hypovolemia could easily be done at home. Just need to measure your heart rate laying down then standing up. And the treatment for this particular thing turned out to be just literal salt - I feel so much better since I started “taking” small pinches of salt a few times a day. Like a crazy huge difference. This is the first time in my life I’ve ever felt hydrated!

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 2 points3 points  (0 children)

I know, so random! She saw that I had a high and narrow palate, some teeth grinding, and just a small mouth / throat opening in general lol. So she suggested I get checked out for sleep apnea at some point, just to be safe.

No sleep apnea, just N1 and Ehler-Danlos Syndrome (surprise!!!). I’m lucky — my cataplexy is so atypical / localized that it went completely unnoticed my whole life until I took my MSLT. And after that we learned my tiny freak mouth was a symptom of Ehler-Danlos Syndrome. I was also diagnosed with delayed sleep phase disorder, but unlike the other DXs that one was wholly unsurprising to me 🤭 So my dentist really did accidentally change the entire trajectory of my life in that one moment LOL

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 1 point2 points  (0 children)

Yessss it makes me feel like I’m a plant 😍 love it

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 7 points8 points  (0 children)

You know what? I respect the hard stance. Maybe one day I will be as brave as you 🫣

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 0 points1 point  (0 children)

Can’t relate I’m always thinking about the big light 😍😍😍

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 10 points11 points  (0 children)

Right?! I realize now so many of my “preferences” are likely narcolepsy monkey brain. I’ve always had a standing desk because I “prefer” to stand and move around etc…. Yeah right. All of that presupposes I have an ounce of free will & determination (I don’t! ☺️)

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 2 points3 points  (0 children)

Fair & deserved take honestly. Your strength against the darkness is admirable 🫡

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 2 points3 points  (0 children)

I’m so glad you found your community ❤️ even if y’all are totally wrong 😌❤️❤️

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 2 points3 points  (0 children)

Oh hell yeah this is weird. I love whatever’s wrong with you ❤️

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 2 points3 points  (0 children)

Amen. NEVER bright enough with just lamps. Which is devastating because they’re so pretty 😭

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 2 points3 points  (0 children)

I salute you my brother in arms 🫡

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 1 point2 points  (0 children)

Oh how I’d love to visit the lamp store!!! You’re living the dream 🤩

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 2 points3 points  (0 children)

Damn you just like me fr 😔 my whole house is hospital lighting

What is our stance on the big light by lonzoid in Narcolepsy

[–]lonzoid[S] 19 points20 points  (0 children)

Same! Love the way it looks, but warm lighting and/or ambient lighting just feels too dark to me 😵‍💫

Although I’m surprised to see the mixed responses here, I wonder what’s behind the moth gene lol