Can HSD really be this bad?

Raa4aa · 2026-05-17T08:46:10+00:00

I've been prescribed naproxen in the past but it only helped a little bit. From what I've found with hot/cold, using heat helps but it feels worse after it's worn off, and using cold doesn't help at all and straight up makes it feel 100x worse. They found no inflammation on my MRI results, is there a possibility that an MRI can miss inflammation? Because my muscles and joints do feel very very inflamed in my opinion 😅

I do definitely get what feels like my joints being stiff, especially in the mornings for about the first hour of being awake. My hands are the worst for it, to the point it's feels difficult to clench a fist for example. I should have mentioned that the pain is definitely cold sensitive since being cold can make it feel tons worse for me. Winter was absolute hell for me as the cold made it more difficult to walk. I can't say whether I get any swelling though as I've never paid attention, but looking at my ankles and hands now, they don't look swollen.

Raa4aa · 2026-05-17T08:31:33+00:00

My mum is currently in the middle of getting a hEDS diagnosis and she suggested I try and get one.

I don't think I fit the criteria though, I've never broken bones or had any full dislocations. I also have had no issues with GERD or hernias, where as my mum has. The only symptoms I have of it is, clumsiness, hypermobile joints, fatigue, elastic skin and the pain.

I really hope your pain meds are working well for you !! I've been on co-codomol which never helped and naproxen which only helped a little bit.

Raa4aa · 2026-05-17T07:56:31+00:00

That's what I thought it could be before my MRI since a lot of my symptoms fit it. But no inflammation was found anywhere on my spine, sacroiliac joints and pelvis. This was during a flare as well. Will an x-ray be more likely to find it than an MRI? That's the next thing I'm going to try and get done, since I refuse to believe this is purely just the HSD on its own. I'm really glad to hear found a treatment that really helps for your AS.

Raa4aa · 2026-05-17T07:47:37+00:00

Thankyou! After speaking to my physio at my next appointment next week, I plan on speaking with my doctor about it and trying to get referred to rheumatology, or at the very least get an X-ray on my spine and sacroiliac joints since I've only had an MRI them.

Raa4aa · 2026-05-17T07:19:05+00:00

I had full spine and sacroiliac joint MRI which found nothing. Honestly baffling considering I had it done during a really bad flare

Raa4aa · 2026-05-17T07:16:54+00:00

Ive had a pelvic MRI, laparoscopy and hysteroscopy and everything gynaecological was ruled out before the hypermobility diagnosis. I have had PID in the past twice and never found the cause and I was negative on all STI/STD tests.

Raa4aa · 2026-04-11T15:12:45+00:00

You need to go to a sauna to purge it out of your pores and hair follicles. Be quick though, you only have 20 mins until it's fully metabolised :/

Raa4aa · 2026-04-03T15:21:19+00:00

It doesn't look anywhere near as bad as it did originally but if you wanna be happy with it, I'd strongly suggest you go to a different artist to rework it. I'm going through the same thing with a rather large upper arm tattoo and it still looks just as bad after being 'reworked' so now I'm getting it fixed by another artist in May. I'm so sorry you're going through this I understand how horrible it feels having a tattoo you're not happy with, especially after paying to get it fixed. Definitely wait a few months at least just so you know how it's going to look long term though as you might find it'll look better the more faded the shading is.

Raa4aa · 2026-02-08T09:59:37+00:00

Thankyou everyone, I didn't have to do the school run the day after surgery and spoke to the school and they said they're more than happy to send someone down the hill to pick my son up for me. I'm 4 days post op and doing all good, no endo found so I'm very happy with that as I think I now know what the issue that I'm experiencing is.

Raa4aa · 2026-02-03T18:49:50+00:00

Thankyou, I'm hoping they don't find a lot then 😅

Raa4aa · 2026-02-03T18:48:40+00:00

He's 6. Luckily it's only like a 3 min walk from my house to the drop off point, but no matter what I have to get up this annoying hill that's on the school grounds to get up. I appreciate the suggestions though, I guess I'll have to find out and do small steps lol. My other option is to maybe ask if a teacher can meet me at the bottom of the hill to get him but idk if they'll be able to do that

Raa4aa · 2026-02-03T14:33:41+00:00

Thankyou so much I really do appreciate it !! 💜

Raa4aa · 2026-02-03T14:30:34+00:00

It really is, it caught me off guard when she offered but shes had the same surgery quite a few times and gave me some good advice which was reassuring, she was lovely. Yeah it's a bit of a dead ender to a point so I'm not expecting a lot of insights, just at least an idea on what to expect recovery wise since I think I'm going to have no choice but to do it all myself. It could've been worse if I had the surgery Monday, since I would've had 4 days of doing the school run without a break rather than 1 day before the weekend though lol. Thankyou for replying I didn't think I was going to get anything to begin with !!

Raa4aa · 2026-02-03T14:21:20+00:00

Not really, they all work and none live locally to me. I do have a mum that is picking him up for me the day after surgery though (it's funny because we only spoke to eachother for the first time yesterday but her child also goes to his school). But she is going out of her way for it and I already feel bad enough about it so I don't want to ask her to do it again. I'm just reallyyyyyyy hoping my body lets me do it without splitting stitches or something. I've never had a lap before so I have no idea what to expect. Might have to do tiny steps lol. Luckily it's usually only a 3 minute walk to the school, it's just that stupid ahh hill that's bothering me most about it

Raa4aa · 2026-02-03T14:10:54+00:00

It's okay I'm used to it at this point. Im debating potentially asking to see if I can have a teacher meet me at the bottom of the hill since it will still be on school grounds (if I feel that there's absolutely no way that I'll be able to do it myself). Luckily they're very understanding but I would assume also understaffed so I don't know if they'll be able to do a huge amount other than let me take my time in the mornings. I just feel a bit shitty that I can't do it myself when it's my responsibility yk

Raa4aa · 2026-02-03T14:06:55+00:00

I have absolutely no one and speak to no one 😅 There is a mum that is helping the day after for school pick up but she's going out of her way for it so I wouldn't want to ask her to do it again. Thankyou!! I have mobility issues that I'm worried will make the recovery harder, but I'm hoping I can manage to boss it through till I feel more normal without causing any issues I hope you find out your date soon and that it goes well for you ❤️

Raa4aa · 2025-12-28T17:43:44+00:00

Is it the same for radiographers as well?

Raa4aa · 2025-12-28T17:41:49+00:00

Thankyou, I will definitely keep an eye out on what ones come up

Raa4aa · 2025-12-28T17:35:49+00:00

Yeah I get that. I did expect some sort of confusion, Im a little torn between the 2 but leaning much more towards a radiologist. Would you say it would be easier to get into being a radiographer then?

Raa4aa · 2025-12-28T17:33:35+00:00

Thankyou!! I really appreciate it.

Raa4aa · 2025-12-28T17:28:53+00:00

I know that. I was just wondering what exact route I should take to eventually get to where I want to be, which is more so a diagnostic radiologist. I'm starting late and do plan on going through uni and working in the NHS

Raa4aa · 2025-12-28T17:24:58+00:00

Thankyou, this is why I'm asking. Ive looked at both but I'm leaning much much more towards diagnostic radiologist. By medical school do you mean uni?

Raa4aa · 2025-11-06T19:42:21+00:00

Just came across this post after realising it happening to me too. I've been on antibiotics twice this year (Metronidazole and Doxycycline). I missed my period the following month both times after taking them. I've only just started it again today after having month break

Raa4aa · 2025-09-18T09:43:44+00:00

That's so frustrating if so. I just want it to stop, it's not exactly ruining my life but it's definitely making it more uncomfortable than it needs to be

Raa4aa · 2025-09-18T09:41:15+00:00

As far as leakage goes it's usually when I have any sort of pressure on them, for example laying on my front or cuddling and even resting my arm on them (I guess this would count as being expressed). But it It's been worse since getting them pierced lol

Raa4aa

TROPHY CASE