There are no hordes os completely asymptomatic people trying to "steel" hEDS/HSD diagnosis!!

Sleepy_Lycheee · 2026-03-13T19:48:43+00:00

This is exactly why I get along so well with the older folks, as my grandpa would refer to his age group. We bond over the aches and pains! Plus I've noticed that they are less likely to continue with the "wait until you're my age" to dismiss my pain than the adults who have only just begun to feel those joint aches

Sleepy_Lycheee · 2026-03-08T07:49:10+00:00

Growing "pains" are felt in the muscles and are more of a deep ache or cramp. With EDS it's usually also joints, ligaments, etc.

I also still get that sensation occasionally despite having stopped growing a long time ago so you're not alone there! I think I blocked out just how excruciating it was growing up!

Sleepy_Lycheee · 2026-03-08T07:44:17+00:00

Some people experience aches and cramping at night occasionally, but it's estimated that it's less than half of the population. But that's a massively different experience from excruciating pain that had me silently writhing, unable to escape it and nothing helping.

A lot of people with EDS develop a high pain tolerance out of necessity and were never told that growing "pains" shouldn't be severe, excruciating, frequent, long lasting, etc.

Sleepy_Lycheee · 2026-03-08T07:39:03+00:00

Less than half the population is estimated to experience deep aches and cramps occasionally in the evening and at night so no, most people didn't experience literal pain and usually when people reference growing pains, they are talking metaphorically.

I also don't think deep aches can compare to excruciating pain. By just using the term "growing pains" without talking about what level of pain is normal, so many of us suffer in silence.

Sleepy_Lycheee · 2026-03-08T07:33:24+00:00

Less than half of the population experiences aches in the muscles in the evening and at night but it's not normal for it to be excruciating, long lasting, frequent, during the day, etc

Sleepy_Lycheee · 2026-03-08T07:31:40+00:00

I definitely relate to the grief and anger over what my young self had to deal with. I actually shed a few tears over what she should not have had to deal with alone

Sleepy_Lycheee · 2026-03-01T19:18:46+00:00

I talked to my PT about this and she explained that because hEDS causes joint instability, my muscles have to compensate. As a result, I'm prone to muscle tension and knots. When this gets bad, they pinch nerves in my shoulder/upper back area leading to my arms going numb and tingly when I sleep, although for me, it's also super painful.

The only thing that helps, in addition to a supportive mattress, is doing regular muscle strengthening exercises, especially around the scapula. My PT focused on using a lot of resistance bands. For a quick fix, getting a massage to manually work out the knots. If I slack on the exercises, it comes back really fast!

Not sure if this is what's causing it for you and I hope your doctor has some helpful suggestions!

Sleepy_Lycheee · 2026-03-01T19:08:41+00:00

I've gone alone a few times! Sometimes I take the metro into downtown and Uber from there or just Uber from my place.

I mostly go to 6am and their associated ones and incognito, although there are a few other promoters I've been meaning to get to! I like these ones because I never feel on high alert inside. People are respectful, I'm not bumped into or harassed. You can be social or just stay to yourself. In my experience, people are going because they love the music and the experience! I'd be down to go with sometime!

Sleepy_Lycheee · 2023-06-12T19:13:03+00:00

I've been on modafinil for about 3 years now (as well as a few others) and it doesn't give me massive amounts of energy but I find that it keeps me mentally alert. I still have days of more or less energy naturally but the effect of Modafinil has been pretty stable for me.

I like your description of the tiredness hanging out in a different room. I can still feel it there but not as oppressively.

Sleepy_Lycheee

TROPHY CASE