Maybe people with lax joints chiefly go to orthopaedic surgeons but my impression is that congenital laxity severe enough to actually cause pain is not common.
I saw the orthopedist(s) routinely growing up but never once went to a rheumatologist until I was almost 30 and referred to one to be evaluated for Fibromyalgia (which seems a far more likely candidate for causing wide-spread pain than hEDS).
Another point is that in the striking cases of joint laxity I have seen the problem tended to be a problem for one particular class of joint.
It started with one joint: my right ankle in which I had a bimalleolar fracture with ligament tears when I was ten years old. It never really healed properly and I have continued to have various ligament injuries every since. Within a year and a half of the ankle fracture, my right patella began subluxating and just not tracking properly. Within a year of that, my right shoulder started subluxating and then spontaneously reducing. I never told anybody because it always went right back into place, though it would be sore for weeks after. Besides, when I began complaining of pain in my legs a year or so after the ankle fracture, the pediatrician said it was growing pains or that I projecting pain or whatever. My 11 year old self took it to mean that everybody had pain like that and I should quit being such a pussy and just buck up and live with it. It wasn't until I was almost 30 before I began to realize that the pain (which was much worse by then) was not normal.
I've read that estrogen contributes to ligament laxity. Could puberty (all of this started post-puberty) have played a role? Within a year of the ankle fracture, I also began developing ME-like symptoms and was, thus, becoming less active, so assume muscle atrophy may have played some role as well, though I remained active enough that I'm hesitant to say I definitely had ME by that point. Fluge and Mella have spoken of blood flow dysfunction (though, tbh, I'm unclear about what they mean, exactly, by it) and wondered what role that might have if joints aren't getting enough blood. I know all of this is just pure speculation. What we need is some damn lab work already!
While I find the scientific validity of the research being published on hEDS to be poor, I can't deny the very practical benefit of the stories they are telling. When I look back at my adolescence, everybody had a vague sense that something was wrong with me. After the EDS diagnosis, the mother of a friend of mine growing up exclaimed "I knew something was wrong. You were always on crutches and that's just not normal!" In terms of both the injuries and the ME-like symptoms, I routinely missed at least 20 days of school a year. But without some diagnosis, some story to give school officials, I never got any educational support. I went on to study for an academic career that my professors seemed to think I was intellectually capable of but given how much school I routinely missed, was really, looking back, never going to be an option. But without some explanation, I had no idea why or what to do with my life.
From the perspective of the science, these stories muddle everything up. But when it comes to the day to day practicalities of living, what do we do without these stories?
[ETA: I got distracted and meant to finish the paragraph about joint involvement by noting that as the years have passed, I've had joint laxity/dysfunction/subluxations/dislocations in many of my major joints (SI joint, both ankles, hips, various vertebrae and ribs, both shoulders, left elbow, and the index & middle fingers of both hands frankly dislocate so that I have to pop them back into place making it very difficult to, say, cut a steak). I've assumed that's been due to weight gain and muscle atrophy as ME has worsened. Though the finger problems have just been in the last 10 years and surprised me. Physical therapy has been helpful in targeting muscles to strengthen. ME makes exercise a challenge though I seem to have found a good balance of 2-4 rep exercises once or twice a week. Indeed exercise seems a funny word to use given it lasts for about 30 seconds or so.
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