Sympathy on the sinus stuff, I went through about a decade of sinus headaches and don't want a recurrence, thank you! I suspect in my case they were environmental or stress-triggered as they disappeared once I'd stopped working for Evil Aerospace. I didn't realise your insomnia was quite as long lasting, but that kind of pain would be just as able to trigger insomnia as the hypermobility pain that triggered mine.
It definitely sounds like you have some form of hypermobility syndrome. Dislocations definitely aren't mandatory, I've had maybe half a dozen possible ones in a quarter century of active problems - 'possible' as they've all had distinct sensations of the bone sliding our of joint, but have either reseated themselves, or gone back in with minimal pressure - more severe than usual subluxations might be more accurate. Your family background sounds like a classic description, and losing range of movement is something that happens as people age, or injure joints - I definitely don't have as much range of movement in my shoulders as I used to, but it's still more than normal.
If you look up Ehlers-Danlos Syndrome, you'll find lots of description that focuses on stretchy skin issues as well as dislocations and joint issues, the full set is absolutely not required, there are several different types of EDS, and stretchy skin stuff is Classical Type, not Hypermobility Type. There's a wide range of frequency of dislocations, from hundreds a day, to almost none, or none at all. And the looser ligaments and tendons can also mean we don't do as much damage when we do stuff that might result in sprains in other people. I'd suggest asking your PT if they are thinking EDS, and whether it's worth pursuing a diagnosis, which AIUI is usually done by a geneticist in the States, though there's no genetic marker for Hypermobility Type (I suspect it'll turn out to be several different mutations causing overlapping effects).
The basic theory behind all this is we have a mutation in the genes coding for collagen, and it's increasingly being realised that means issues throughout the body may be related, as collagen is fundamental to pretty much every organ, not just joints. But understanding at the general practitioner level can be pretty lousy, average time to get a formal diagnosis is still rated in years.
There are EDS foundations in both US and UK, eds.com and eds.org, both with lots of patient info, and there's also the Hypermobility Syndromes Association, hypermobility.org, plus a range of online EDS/hypermobility fora (the one I follow is specific to hypermobility and neurodiversity - there's a statistically significant link).
And you'll see lots of zebras, because doctors are taught "If you hear hoofbeats, expect horses, not zebras", but hypermobility/EDS is one of life's zebras.
no subject
It definitely sounds like you have some form of hypermobility syndrome. Dislocations definitely aren't mandatory, I've had maybe half a dozen possible ones in a quarter century of active problems - 'possible' as they've all had distinct sensations of the bone sliding our of joint, but have either reseated themselves, or gone back in with minimal pressure - more severe than usual subluxations might be more accurate. Your family background sounds like a classic description, and losing range of movement is something that happens as people age, or injure joints - I definitely don't have as much range of movement in my shoulders as I used to, but it's still more than normal.
If you look up Ehlers-Danlos Syndrome, you'll find lots of description that focuses on stretchy skin issues as well as dislocations and joint issues, the full set is absolutely not required, there are several different types of EDS, and stretchy skin stuff is Classical Type, not Hypermobility Type. There's a wide range of frequency of dislocations, from hundreds a day, to almost none, or none at all. And the looser ligaments and tendons can also mean we don't do as much damage when we do stuff that might result in sprains in other people. I'd suggest asking your PT if they are thinking EDS, and whether it's worth pursuing a diagnosis, which AIUI is usually done by a geneticist in the States, though there's no genetic marker for Hypermobility Type (I suspect it'll turn out to be several different mutations causing overlapping effects).
The basic theory behind all this is we have a mutation in the genes coding for collagen, and it's increasingly being realised that means issues throughout the body may be related, as collagen is fundamental to pretty much every organ, not just joints. But understanding at the general practitioner level can be pretty lousy, average time to get a formal diagnosis is still rated in years.
Wrt resources, one of my friends pointed me at a recent xojane article yesterday, which is a slightly Oprah-ish intro, but has some good stuff https://disqus.com/home/discussion/xojane/it_happened_to_me_my_boyfriend_and_i_were_both_diagnosed_with_ehlers_danlos_syndrome_by_elizabeth_ev/
There are EDS foundations in both US and UK, eds.com and eds.org, both with lots of patient info, and there's also the Hypermobility Syndromes Association, hypermobility.org, plus a range of online EDS/hypermobility fora (the one I follow is specific to hypermobility and neurodiversity - there's a statistically significant link).
And you'll see lots of zebras, because doctors are taught "If you hear hoofbeats, expect horses, not zebras", but hypermobility/EDS is one of life's zebras.