Hi all. This post has taken a while to get started, because the sheer size of what I have to type is going to be a huge burden on our shoulders and arms as they are now.

So... a while back, I heard we might have EDS from our wrist doctor. At the time, I have to admit I didn't know much about it and didn't do much research on it. Our friend told us a surface-level description of EDS: It's a hypermobility disorder affecting the skin and joints, it might make one able to move their body past its natural limits, and it's generally understood as the "stretchy skin disorder".
I didn't think a lot of it applied to us, but some of it certainly did. Things like joint popping and snapping, chronic pain (to some degree), and I later found out EDS can cause very smooth skin, which ironically means us being so pretty is because of this disorder.

On the 9th of this month, we were having a usual affair of a day, then Sunny, out of curiosity, decided to research EDS some more, maybe figure out what type we have.
What they found was... staggering. Nothing short of world-shattering. We needed a few days to take it all in.

We didn't just discover a disorder we had, one more drop in the bucket. We saw our entire life, unexplained symptoms, from birth to present day laid out before us.
It was upsetting, disturbing, and shocking. It did give us a much, much better understanding of our situation, but...

Let me just run you through this really quick. Here's what we learned.

The root of all evil

We have hypermobility Ehlers-Danlos Syndrome (hEDS).
We only suspected EDS before, but now we know 100% for certain, even without an examination and diagnosis.

We got most of our information from the Wikipedia page on EDS and The Ehlers-Danlos Society. We're no experts, but it did teach us some very important details:

Effects may range from mildly loose joints to life-threatening cardiovascular complications. Due to the diversity of subtypes within the EDS family, symptoms may vary widely between individuals diagnosed with EDS.

So, basically, while hEDS is a somewhat common diagnosis, that's only because the diagnosis is very broad, meaning it includes people with minor symptoms and no pain, whereas cases like ours are more rare.
I believe this is why our brother displays only hypermobility and no other symptoms or pain, while we have a very bad mixup of symptoms.

We believe we have the kind of hEDS that causes weakened connective tissue and collagen around the whole body, which is the real serious disorder and needs serious help.

List of things we now know are caused by our EDS

Chronic pain	Muscle and joint, and widespread pain
Chronic fatigue
Joint inflexibility/significant joint stiffness	No source, but we remember reading it that day
Soft, smooth, pretty skin
Easy bruising and slow healing	And relatedly, random bruising with no explanation, anywhere on the body (but usually our legs)
Transparent skin
Partial dislocations
Exercise intolerance	This one is extremely huge. I'll get into why in the story bit
Tendon and ligament issues
Osgood–Schlatter disease (painful lump on the knee)	The Wikipedia page also mentions infants having too much pain crawling, so they butt-slide. Sunny did that.
Heat intolerance, especially on hands and feet
Dysautonomia	In our case, hypotension (low blood pressure), dizziness, bladder issues, temperature dysregulation, sleep problems
POTS, a sudden spike in heart rate when getting up	It's more than just "iron deficiency", you see stars
Unexplained bladder issues
Chronic "clumsiness"
Hypersensitivity to touch, sound, and taste	Fuck these symptoms in particular
IBS
GERD	Possibly caused by hiatal hernia, which means the weakened stomach lining is penetrated by hernia
Abdominal pain, bloating, gas issues
Random nausea and diarrhea
Early satiety (feeling full before eating very much)
Herniated discs in the neck	And related issues, like the neck being too weak to support the skull, causing other problems
Random headaches and migraines
Gorlin's sign (can touch nose with tongue)	Sunny did this all the time growing up
Nerve disorders (carpal tunnel, acroparesthesia, neuropathy)	This one's so important I just copied the Wikipedia text. Holy crap. We've had nerve pain since basically forever, and, remember, carpal tunnel and cubital tunnel in both arms.
Nerve entrapment	Possibly the reason why we ended up with double carpal tunnel and double cubital tunnel
Small fiber neuropathy (pain, numbness, tingling in hands)
Headaches that are worse when standing
Neck and shoulder pain, restricted neck motion	Ours is even worse because we also have fibromyalgia
Weakness in arms
Cold hands
Swallowing issues
Dysphonia (difficulty producing and sustaining voice)	It's always been somewhat painful to speak, until high school when something "changed" and our voice became extremely quiet
Anxiety, depression	Predisposed likelihood
Autism and ADHD	I was surprised to read this too
Transgender	No, I'm not kidding. We saw it here on the Wikipedia. Somehow quite a few people with EDS end up trans

And after all of this, we were also able to confirm we also have Fibromyalgia. I mentioned it before a few times, but now we have total confirmation:
This page on an Ehlers-Danlos site explains that fibromyalgia is diagnosed using specific pressure points. When we were diagnosed with fibro a while back, that's exactly how the test was done. There was no mistake or misdiagnosis.
We have both.

Both FM and hEDS/HSD are common conditions. It is not surprising therefore that they may occur together by chance in an individual. However, several small studies and commentaries also suggest that they may be associated with each other by potentially sharing similar mechanisms that lead to pain. Whether by chance or whether associated, it is important that your doctor does not ignore hEDS/HSD just because FM is present. Aside from the fact that hEDS/HSD has other problems not seen in FM that could be missed, the physical therapies used to help FM might cause harm if not adapted for the hypermobile individual.

Also, in the list I mentioned carpal tunnel and nerve entrapment. Take a look at this reddit thread Sunny found the same day. We were appalled and speechless reading this, because it sounds exactly like us.
We also found "23 signs you grew up with Ehlers-Danlos Syndrome", and while reading it, we were once again shown Sunny's entire childhood laid out before us. It was terrifyingly accurate.

Seeing everything we did hit us really hard. Sunny had to tap out, and was crying in the back of our head for a long time. I was checked out and pretty distant.
We felt like most of our life and experiences were set in stone before we were even born. Hell, even right down to autism, adhd, anxiety, depression, and being trans. How the fuck!?

What it was like growing up

We discussed this for a while, and I have permission to share with you. I want to elaborate what it was like for Sunny growing up with hEDS.
We strongly believe what Sunny went through contributed to us developing DID and splitting.

TW: growing up with a disorder, mismanagement, adult insensitivity, lack of accommodations, gaslighting

Yeah, this is the venting part of the post. Here we go.

Life was brutal for Sunny growing up. Surprisingly, we've always been able to remember a few select memories from before age 5 - among these, we know that Sunny could've spoken out loud at any point, but chose not to because it was too painful.
As mentioned in the list above, Sunny butt-slided instead of crawling, because our kneecaps have always been painful to the touch. Various physical contact with their parents like hugs were very painful and restrictive.
Even from a very young age, Sunny always preferred to stay inside on the PC - yes, because we've always been nerds, but also because being outside in the sun has always been overwhelming and uncomfortable. Yes, it's made worse by being in south Texas, but still.

Sunny used to be even more hypersensitive to touch than we are now, in elementary school. We grew up with a deep-seated fear of touch and quickly had fear of exercise and exertion added to that.

Gym class was hell for the two of us. We already had chronic widespread pain, but exercise has always aggravated our joint and muscle pain, and led to rapid exhaustion and fatigue that made it extremely difficult to even move.
The days when we had to be outside were even worse, because of our sensitivities to heat and sunlight.
In high school, every day I had my PE class (tennis) I had to go to the nurse and go home sick, missing other classes.
Speaking of, we've always been frequent visitors to the nurse, in whatever school we went to. We couldn't help it - we'd get nauseous, dizzy and lightheaded, pretty much every day. We had to go home early a lot.
One year in middle school, Sunny almost got expelled simply for missing too many days. They barely made it.

Sunny often "shambled" through the halls in middle school from exhaustion. And because of hypersensitivity and autism, Sunny was in sensory overload any time they were in gym class, elementary or middle school. Music was often played booming loud over the speakers there.
We can also recall intense strong pain in their throat - especially around the age of 11, Sunny's neck and shoulders locked up tight and it became extremely difficult to look around.
We always wished to get rid of our adam's apple because the neck pain and hypersensitivity combined nastily to make it very painful to the touch.

I've now got to get into the adult incompetence. Teachers, and sometimes the school nurse, were insensitive and unkind to both of us.
They constantly denied what Sunny was saying about pain and fatigue, and constantly countered with gaslighting: "it's not that bad", "you're just making it up to get out of class", "you're just lazy", etc.
Sunny's parents did this to them constantly too. The phrase "you're just sensitive" is burned into our brain from how often our birth mother said it.
And yes, I hear you, it's debatable whether it was malicious or really "gaslighting" because to an adult, it's inconceivable that a child is in chronic pain. Doesn't matter, it still left deep scars.

The constant gaslighting, ignoring of symptoms, denial of pain, led to Sunny feeling like they were alone floating in a void. Their own parents didn't believe them and refused to help.
During middle school, the gaslighting worked, and Sunny believed they really were just imagining the pain and symptoms. It took several years to even begin to untangle the mess.
It wasn't until I was around in 2017 when I was pushed by my partner at the time to tell our birth mother about the pain and symptoms still continuing. Only then did she take me to the doctor and try to help.
That led to a whole other story involving conversion disorder, where intense, unexplainable leg pain appeared due to the sheer emotional damage we'd endured.

The point I wanted to make by venting all of this is that our mind and perception of our selves and body was warped very hard by the world around us and that's why this is such an important revelation.
Sunny has been searching for the answer to why this is all happening for their entire life. Now we finally have it. 24 years of nonstop, unexplainable pain that no one believes, and here we are.

So what are you going to do now?

Very good question. I promise I didn't want this post to just be venting and trauma dumping, I'm making it for a reason.

There is no cure for EDS or Fibromyalgia. Keep this in mind. The only treatment is supportive, ie. managing symptoms and reducing pain.
We recently had a friend mention that gene therapy to treat EDS might be an option within the next few years - if that's the case, absolutely we'll take it, but we don't have a way to access it.
A few sources mention physical therapy and similar, but keep in mind we have exercise intolerance. Physical therapy has always been bad - not as bad as gym class, but still, painful.

One option I'm actually looking forward to is medical marijuana. In Texas, to get on it, one needs a referral to an approved medical marijuana doctor, and needs to convince them the pros outweigh the cons. (What cons?)
We saw something that mentioned medical marijuana can vastly improve the lives of hEDS patients. Sunny found an approved medical marijuana doctor near us, and if they don't accept us, there's a whole list, including a few others near us, and a telemedicine one.

But right now, what we're seeking the most is a rheumatologist and a pain management specialist. I went to a rheuma before - the one who diagnosed us with fibro.
But I decided to seek another one, since he severely underprescribed gabapentin and didn't seem to care about it. We see our new rheuma on Monday.
As for the pain management specialist, we have an initial visit with one set up for the 22nd. We're hoping this won't be an insensitive privileged white man like the last one.

The plan is to get diagnosed with hEDS proper. There's no genetic testing for hEDS, but the Wikipedia page lists a number of tests, and hell, mentioning that our brother is hypermobile will probably help our case.
After being diagnosed I hope to pursue options. The more info we're able to tell them about our hEDS, the better. I seriously hope we can impress upon them our exercise intolerance and how badly we need to avoid it.

I also need to mention our arms - our freaking stupid arms. I'm glad that we finally have an explanation for why our arms might be dying, but it's not enough. We need treatment.
The fact that our wrist surgeon was the one who suspected EDS is HUGE. It means all I have to do is tell him our findings on Tuesday and he'll believe us 100%. He might not be able to treat the underlying EDS, but maybe he can offer options and advice.

Seriously, how great is it that now we know what might be destroying our body from the inside out? It was fucking scary randomly losing the use of my arms until I was bedridden. Now we might have a way out... and not just out of that, but other symptoms and pain too.

Something else to mention is disability. Getting on the disability fund in the US is hard, especially with a certain someone's interference. The plan here is to get our diagnoses in writing from our new rheuma and pain management specialist, and apply for disability in person.
Long-term, we don't know what the future holds for us (and we're very scared of thinking about it!) but we'd like something like a disabled living home.
We really wish we weren't dealing with the US's bullshit with our horrible health situation, but that's just how it is. We're not alone either, now that we know we have hEDS, we have that entire subreddit to check on (when we're ready to receive psychic damage that is).

Also, one of the most important things we've gained from this is the ability to vouch for ourselves. Think about it. Before this discovery, we had a million strange, disconnected symptoms floating around, and it was always too much effort to say them all.
I plan to edit the health page on our website to talk about our EDS and give a surface-level description of it. The goal is to easily explain to people what we deal with.
We're glad to have friends who really know and understand our pain, but others like our birth family have no idea just how lucky they are.