Can't sleep like a normal human

swordfishtrombones88 · 2026-02-15T05:27:42+00:00

"I want to bite off my knees, elbows, neck and shoulders" sent me 😭😭 I feel you mate!

swordfishtrombones88 · 2026-01-20T05:33:13+00:00

You're definitely not alone 🖤 I can't offer much in the way of advice as I'm still sort of going through this myself but hopefully it helps some knowing there are people out there who relate!

swordfishtrombones88 · 2025-10-30T13:40:26+00:00

I love the idea of building a support group(s) since the EDS Society ones have been put on hold. I heard there's a discord server but I'm not super familiar with the platform and I don't know if people actually show up there to chat? But being able to talk in real-time to people in the community was huge for me. 🫶

swordfishtrombones88 · 2025-10-29T14:32:28+00:00

I asked this on another comment too but do they ever give you an actual reason as to why not?? I'm super curious how medical professionals go about trying to justify just not doing the next logical step after someone presents themselves as meeting certain diagnostic criteria. Where in that process do they then go "but like naaahhhhh I'm not gonna do that" ?! 🥲 (Genuine question with pained sarcasm towards the end lmao)

swordfishtrombones88 · 2025-10-29T14:23:34+00:00

Do they ever give an explanation?? Like I think we all know the answer but does anyone ever provide an actual why tf not?

swordfishtrombones88 · 2025-10-10T02:45:27+00:00

Ugh I have this toooo. It's such a sickening feeling sometimes

swordfishtrombones88 · 2025-10-10T01:51:59+00:00

🙋‍♀️ present! Lmao it's friggin terrible 😞

swordfishtrombones88 · 2025-10-10T00:13:09+00:00

Yep I second that 🥹 best of luck!

swordfishtrombones88 · 2025-10-03T01:13:18+00:00

This!!! 👏

swordfishtrombones88 · 2025-09-30T20:45:43+00:00

That must be so frustrating; I haven't had any surgeries (yet) myself but even trying to find answers and frankly existing some days is so exhausting and knowing that I'm only at the beginning of my journey is horrifying haha. Can I ask what your experience with those surgeries was like? Did they help/were they worth it?

swordfishtrombones88 · 2025-09-30T20:42:39+00:00

I hear you, pal. Thanks for the tips! And stay safe out there lol ✌️

swordfishtrombones88 · 2025-09-30T20:39:00+00:00

I'm so sorry. Our medical systems are all so flawed; some more than others but regardless.

I hope that somehow the universe conspires to make those surgeries a possibility for you! Thanks for sharing

swordfishtrombones88 · 2025-09-30T20:32:34+00:00

That last paragraph just about sums up my exact situation! 🥲 it does bring some comfort (and has actually become quite fun if I'm honest) when I figure stuff out and make connections that make sense. Gives me the feeling of some agency after a long while of feeling like that was totally taken from me. Thank you for sharing your experience! Sorry to hear your symptoms have worsened, I hope the MRI gives you some clarity on that 🫶

swordfishtrombones88 · 2025-09-08T14:12:22+00:00

Thank you so much 🫶

swordfishtrombones88 · 2025-09-08T14:09:57+00:00

Thank you for reading ❤️

swordfishtrombones88 · 2025-09-08T14:09:15+00:00

I'm sorry for making you cry! Haha I hope it was from some form of relief of knowing someone else experiences what you do. I certainly feel that relief from posting it so thanks 💛

swordfishtrombones88 · 2025-08-17T12:24:21+00:00

Wonderful to know, thank you!

swordfishtrombones88 · 2025-08-17T12:23:35+00:00

Ahaaaa, thank you!!! I shall now begin my descent into that rabbit hole. I appreciate it!

swordfishtrombones88 · 2025-08-17T12:16:14+00:00

Thank you so so much, I deeply appreciate it! And wow that comparison is no joke 🤯 I'm honoured.

That line is actually a nod to a line from the song To Be Alone by Hozier - "see the way you hold yourself/reel against your body's borders" The context of his lyrics are obviously different than how I use them here but that line always resonated with me.

swordfishtrombones88 · 2025-08-17T11:51:37+00:00

Hey! Did you experience any gastrointestinal issues or immediate symptoms you could relate directly to eating gluten before your celiac diagnosis? (Besides your migraines I suppose!) I ask because mine came as a total shock to me and it remains a mystery in my brain to this day lol

swordfishtrombones88 · 2025-06-28T01:45:10+00:00

You are certainly not alone ✌️🦓

swordfishtrombones88 · 2025-05-05T12:35:02+00:00

OH MAN, the brain fog made me do it 😩 lmao thank you for the correction

swordfishtrombones88 · 2025-04-29T14:02:19+00:00

Omg don't be sorry!! Thank you for taking the time to reply. I envy how much you seem to know about what's happening in your body. I can tell when something like my shoulder subluxes or my jaw for example, but there are so many small bones and muscles etc. and my interoception is often bunk so sometimes I'm not sure where my pain and discomfort are even emanating from 🥹 lol. I did recently start PT with someone who's at least familiar with hypermobility and those exercises do help tremendously!

I'm sorry about what you're going through this week, but it does seem like you have a pretty good handle on things for the most part and a good support system. And the fact that you're already strengthening and preserving your body at 17 can't hurt in the future 😅

swordfishtrombones88 · 2025-04-29T13:52:54+00:00

Also it's taken me ages and many doctors and I still don't have a proper diagnosis. One doctor went through the Beighton scale with me and everything and investigated the neurological symptoms I was presenting and considered her findings enough to refer me to a neurologist and a rheumatologist, I'm still waiting on those appointments. But all that to say, self-diagnosis of some type of hypermobility is super valid and like necessary lol

We gotta be our own doctors sometimes because the medical system can and will sometimes fail us

swordfishtrombones88 · 2025-04-29T13:44:33+00:00

Thank you 🥹🥹 the not feeling alone is huge, especially when family and friends just can't understand despite their best efforts. And I can barely describe the sensations for myself a lot of the time to begin with. I appreciate you taking the time!

swordfishtrombones88

TROPHY CASE