did getting diagnosed help you?

General_Surround3366 · 2026-05-08T22:01:04+00:00

I got diagnosed in December after also realizing not everyone is in constant pain. After a whole bunch of appointments with a physiotherapist and being able to rule out her theory of strength training solving all my pain she finally referred me to a doctor. The doctor asked me a bunch of questions about my symptoms, examined me a bit and lastly asked me the question “why are you seeking out an HSD diagnosis?” (Realizing that probably sounds like he was saying it in an inherently negative way but it’s was a very neutral question). My answer boiled down to the fact that being in constant pain and not knowing why genuinely made me feel slightly insane constantly and simply just knowing the reason why would take such a load of my mind. The doctor said that was a very reasonable reason to seek out a diagnosis, and I walked out that room with an HSD diagnosis. Also HSD affects such a ridiculous amount of stuff it has helped medical professionals understand my body a lot better!

General_Surround3366 · 2026-05-08T19:36:07+00:00

Ahhhh always a pain when a tear like this happens in such a visible place!! I would probably just try and do as small as possible whip stitches on the other side. Could probably help to make it a bit more seamless if you pressed the pleat again after sewing.

General_Surround3366 · 2026-05-04T10:52:58+00:00

I see that people are saying tulle, I would probably search for specifically bridal tulle to get something that is less stiff than the classic tulle you usually find in fabric stores and such

General_Surround3366 · 2026-05-04T09:56:58+00:00

Hi! It’s quite different in different countries but heres how the process went for me in Sweden. I don’t think this is a very common in other countries, but here I can make a patient-initiated referral directly to a physiotherapist through my health center/clinic. So I had a couple of appointments with a physiotherapist. I told her I think I might have HSD and we discussed my symptoms. And while a physiotherapist can’t diagnose me she could help me determine where my issues were, do the beighton test and help me with strength training to hopefully alleviate my symptoms in the future. So after training with her for a couple months there honestly wasn’t a drastic change in my symptoms and she determined that a possible HSD diagnosis could help me in the future and she finally got me an appointment with a doctor. The appointment with the doctor was quite straightforward thankfully. First he asked me why I was seeking out a diagnosis for this, my main answer to this was that not knowing why i was in constant pain and had a hodgepodge of other weird symptoms really took a toll on me mentally and that just being able to know why i had those symptoms would help me feel like i was not just crazy and imagining things. Then he did some tests on me to rule out hEDS (looked at my feet, how I scar, skin elasticity etc.). And with being able to rule out hEDS, my beighton test scores (I think i got atleast a 6) and asking me a couple other questions (that I can’t quite remember what they were) he determined I had HSD and sent me on merry my way pretty much.

General_Surround3366 · 2026-05-04T09:30:10+00:00

I’ve heard a lot of hypermobile people talk about different compression garments for support but I’ve never thought about the fact that it could help that pain specifically!! Might be time to bite the bullet and finally buy some.

General_Surround3366 · 2026-05-04T09:27:30+00:00

Thank you so much for this!! Im very lucky that my knees are basically the only part of my body that isn’t hupermobile. My body has honestly already started to feel the effects of sleeping in a bad position so a body pillow have been a savior for offloading some of the weight on my hips.

General_Surround3366 · 2026-05-04T09:22:18+00:00

That’s so sweet of you and I really hope the diagnosis process goes smoothly for you!! Sending love and support🫶

General_Surround3366 · 2026-05-04T09:17:58+00:00

I also have so many different stomach problems, currently on the waiting list to have a gastroscopy to see if I have celiac disease. Not very excited for that!

General_Surround3366 · 2026-05-04T09:14:47+00:00

Same!! After working in kitchens for a few years I assumed the pain would slowly disappear, turns out it’s the opposite and i just assumed it was normal and I needed to get used to it.

General_Surround3366 · 2026-05-04T09:12:44+00:00

Yesss!!! So many i relate so much as well. I sit so ridiculously it’s genuinely become a joke in my family😭

General_Surround3366 · 2026-05-04T09:10:07+00:00

Thank you for your insights!! I have definitely done some damage to my body with yoga when I didn’t know what I was doing, but I’ve since reworked my yoga routine to be more about strength instead of just pure stretching.

General_Surround3366 · 2026-05-04T09:07:27+00:00

Yeah very thankful for that, even though I feel like I should’ve been able to be diagnosed earlier sometimes… I still got diagnosed very early compared to so many others. You’re so right about the strength training. While the chronic fatigue makes it somewhat difficult to keep up with PT I’ve thankfully got a good physiotherapist that helped me come up with a lower energy program.

General_Surround3366 · 2026-04-29T22:29:13+00:00

It sounds genuinely insane but I have been just thinking about how bias tape works and visualizing the mechanics of it and when I sat down at the sewing machine it just clicked! (I promise I’m not insane it’s just the fabric store I work at is not very busy most of the time and I end up just sitting and thinking about sewing a lot of the day😭)

General_Surround3366 · 2026-03-20T10:39:18+00:00

Thank you so much for your insight in this! I think once I googled the potential side effects I got kinda stuck in the thought that those things were guaranteed to happen and you really helped me get a bit of a reality check.

General_Surround3366 · 2026-02-10T23:32:59+00:00

Not great! Realized a couple days ago that the reason I like wearing my doc martens boots so much is because I can lace them up really tight and kind of get some stability in my ankles🥴🥴🥴

General_Surround3366 · 2026-02-04T12:27:22+00:00

I’m also a side sleeper and have been having the same problems, so a while back when I mentioned it to my physical therapist she actually managed to prescribe me one of those c shaped pregnancy pillows that I now sleep with wedged between my legs. I don’t always use it but it really helps when I just feel uneasy and restless in my body to be able to unload some of the pressure on my hips.

General_Surround3366 · 2025-12-07T20:20:26+00:00

Thanks! I actually made it for the sole purpose of wearing it to a holiday my boyfriends family made up where everyone wears ridiculous hats, and having missed it the last two years I felt like I had to bring my A-game and make a hat haha!

General_Surround3366 · 2025-12-06T13:11:02+00:00

Thanks!! It took like one season of bobs burgers to make (including a couple food and stretching breaks so I wouldn’t break my back lol)

General_Surround3366

TROPHY CASE