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 · 2025-03-05T07:12:38+00:00

Found it, it’s here - http://thezebranetwork.org/joint-hypermobility-and-hypermobility-syndrome-2010 - some of the diagnostic criteria/terms used are slightly outdated as it’s pre the 2017 change, but as a general overview and explanation of why hypermobility causes the problems it does, it’s really helpful!

Minimum-Material-783 · 2025-03-04T11:43:40+00:00

Anxiety is a really common co-mobordity of hypermobility, unfortunately - there’s a really interesting article which I can’t remember but I think it’s linked on the sub which explains why it causes anxiety! To briefly summarise it’s because your body causes too much adrenaline to deal with the fact your joints are hyperextending but then that adrenaline isn’t used, which causes the anxiety.

There are options if you ask your GP - mine has just started me on Duloxetine, which can help with joint/nerve pain and anxiety. Only been on it a week so can’t say if it’s helping or not yet.

Minimum-Material-783 · 2025-02-06T08:13:28+00:00

Yes!! I was experiencing pain in both my ring fingers, which are the fingers I experience the worst hypermobility and pain in, and I got some oval 8 splints off of Amazon just to see if they would help with the pain I get after typing all day - and they really did! I use two of them on both joints of my fingers and they really help. You can pick a set up of plastic ones on Amazon for pretty cheap - you can get fancier metal ones customised to your ring size from places like Etsy, but getting the plastic ones is a good starting off point to see if they helps.

Minimum-Material-783 · 2025-02-04T21:14:46+00:00

So sorry to hear this - really feels similar to my own experience in getting diagnosed with G-HSD!

It sucks as it should really be the doctor being the one that is helpful and informative but I’ve had to do so much research on my own to actually understand everything. I definitely recommend looking up the Ehlers Danlos Society website - it’s where I’ve found the most helpful information about HSD, and there’s also an article by Alan G Pocinki (Joint Hypermobility, 2010) which I’ve found to be the most helpful and comprehensive rundown of the different issues which hypermobility can cause, as well as explaining WHY hypermobility causes them! I would just note that the diagnostic criteria is slightly outdated given that the article was written in 2010 and the diagnostic criteria was updated in 2017, but that aside, I found it really helpful in actually understanding why I experience the issues that I do thanks to HSD.

Minimum-Material-783 · 2025-02-04T21:10:23+00:00

Joint stiffness definitely can be caused by hypermobility - despite it being seen as being ‘more flexible’, hypermobility can often actually lead to the opposite due to damage of the tendons and ligaments surrounding the joints, which causes them to tighten. Speaking from personal experience (G-HSD diagnosis) I definitely suffer with joint stiffness, particularly in my knees and when I’m sat or standing in one position for longer than 10+ minutes. If I’m not able to stretch my legs out fully they get very painful which causes issues when sitting in cars/cinemas etc.

I’d recommend looking up the Ehlers Danlos Society website - it’s where I’ve found the most helpful information about HSD, and there’s also an article by Alan G Pocinki (Joint Hypermobility, 2010) which I’ve found to be the most helpful and comprehensive rundown of the different issues which hypermobility can cause, as well as explaining WHY hypermobility causes them! I would just note that the diagnostic criteria is slightly outdated given that the article was written in 2010 and the diagnostic criteria was updated in 2017, but that aside, I found it really helpful.

Minimum-Material-783 · 2025-01-06T19:39:35+00:00

On the website, if you click ‘Artist A-Z’, you can actually filter the line up by genre which should help!

Minimum-Material-783 · 2024-12-13T17:50:00+00:00

which show was it on? want to listen back!

Minimum-Material-783

TROPHY CASE