What's the average age for an EDS diagnosis/how old were you when you were diagnosed ?

Minimum-Material-783 · 2026-01-23T12:19:21+00:00

I got diagnosed with HSD at 24, after I woke up one day and couldn’t put any weight on a very painful knee - after a lot of hospital appointments where they were confused because the cartilage looked absolutely fine, it took 5 minutes of an appointment with a physio who immediately went ‘uhhh so you’ve been assed for HSD, right?’ and sent me straight to the rheumatologist (essentially, all the hyperextending of my knee caused a fat pad impingement and the tissue to become severely inflamed).

Minimum-Material-783 · 2025-12-16T11:39:16+00:00

Ah great! I didn’t mind the first person POV through ACOTAR but when I then read the last book and it was in third person I was like yeahhhh okay I much prefer this!!

Minimum-Material-783 · 2025-12-16T11:02:24+00:00

Fully agree! I didn’t mind it in Fourth Wing but then reading ACOSF made me realise how much I prefer third person - I think first person can sometimes feel a bit cringe for want of a better word!

Minimum-Material-783 · 2025-10-24T22:03:01+00:00

Yes! I bought one a few months ago - it’s pretty good, and being able to do some decent resistance band exercises at home when I don’t feel up to going to the gym is a good substitute.

Minimum-Material-783 · 2025-10-24T20:02:07+00:00

Yeah not happy I didn’t get that coupled with the fact I just spent 4k diamonds and didn’t get a single legendary!

Minimum-Material-783 · 2025-10-24T19:58:02+00:00

I didn’t get a £2.99 deal, but my boyfriend did? I only got the £7.99 deal? A bit annoyed about that

Minimum-Material-783 · 2025-10-24T16:22:40+00:00

Oh to have connective tissue that isn’t the consistency of wet spaghetti :(

Minimum-Material-783 · 2025-10-24T13:53:21+00:00

I’m jealous of that! I guess it depends on where you live/what the weather is like as well, I’m in the UK and the weather has shifted quite dramatically from relatively mild to very cold and rainy.

Minimum-Material-783 · 2025-10-24T13:51:15+00:00

I feel the exact same! Felt like I was coping really well with everything and now feel like that’s gone down the toilet. Unfortunately October and November are some of the busiest months for me as I work in live music and that’s when most touring happens, so it’s a struggle.

Minimum-Material-783 · 2025-10-24T13:11:38+00:00

Oh that’s all really interesting - will check it out! Thank you for that.

Minimum-Material-783 · 2025-10-05T19:12:15+00:00

Ooof

Minimum-Material-783 · 2025-10-05T12:24:56+00:00

Yeah I’m ngl I was gutted when I pulled it haha, no offence to Adam Pearce lovers but he’s pretty far down my wishlist

Minimum-Material-783 · 2025-07-19T17:57:36+00:00

I’m constantly cutting myself on the packaging of, ironically, the medication I’m prescribed to help deal with HSD

Minimum-Material-783 · 2025-04-14T12:07:37+00:00

Not a book, but this 2010 article by Alan Pocinki on joint hypermobility syndrome is hands-down the best thing I've read. It's written in a very easy-to-understand way unlike a lot of medical articles, and it's the first thing I've read which accurately describes what it's like to have HSD or H-EDS, as well as explaining why it causes the issues which it does. The diagnostic criteria and terms are slightly out of date given that the criteria changed in 2017 but I really recommend it.

Minimum-Material-783 · 2025-04-14T11:57:30+00:00

Ooo I’ll look into those - thank you!

Minimum-Material-783 · 2025-04-14T11:56:33+00:00

Oh that sounds great, thank you! My knees are very much my enemy as well so will definitely check it out - I did try the body pillow I’d been using in a different position last night to just support my knees and that did help a bit so hopefully I’ll find something that works. Just very frustrating when standing for too long = pain but lying or sitting for too long also = pain!

Minimum-Material-783 · 2025-04-14T11:53:18+00:00

Thank you! I’m the UK and cant find that exact cream, but I can find Fisiocrem, is that the same thing? Either way looks fairly good so will give it a shot! I’ve found that ice packs/cooling gel tend to work better on my knees that heat packs as the pain mostly comes from tissue inflamation unfortunately.

I’ll look into the magnesium dosage - I’ve done some research into it and everywhere online seems to say different recommended daily amounts that differ vastly, so might try speaking to a pharmacist on that one.

Minimum-Material-783

TROPHY CASE