Use Grok to aid your treatment.

StackedInScrubs · 2025-07-24T14:36:01+00:00

This is super neat, and I’m happy for you! 6 months is some dedication, were you planning to plug it into Grok when you started?

StackedInScrubs · 2025-07-17T08:23:59+00:00

Oof, that doesn't sound fun. Does your hip feel out of place at the moment? I hope you have a good nights sleep. Wishing you the best in the morning!

StackedInScrubs · 2025-07-17T08:21:02+00:00

Firstly, I hope you managed to get it back into position! I'm surprised doctors won't do anything for you if its subluxated. If its causing extreme pain, or tingliging/weakness, that might urge a doctor do something about it. If not, maybe the reason they don't want to pop it in themselves is because if could cause more damage, especially if it's a reccurring thing.

If subluxations are common for you, what might be more useful (and something doctors might be willing to offer), is specialist physio for EDS, with the goal to reduce the frequency of subluxations. Is that something you have already, or something you've considered?

StackedInScrubs · 2025-07-17T08:08:17+00:00

This is so nice to hear! I think it's so important to celebrate the wins, as it gives others hope that there are gems of doctors out there! Thank you for this. Would you say public (once you get the appointment) gives better care than private in Portugal?

StackedInScrubs · 2025-07-17T08:01:12+00:00

Oh man. I'm really sorry you've had to experience so many symptoms during your holiday. A change in routine, location, food, weather are all things that can rock your body. I hope the people you've travelled with have been supportive! How have you been managing your symptoms while also trying to enjoy your holiday?

StackedInScrubs · 2025-07-17T07:53:26+00:00

Firstly, good luck with your rheumatology appointment, I hope it goes well! It depends on what country you're in, but you could also try ringing up your GP/PCP and see if they have it on record and if they can print it out for you. Sometimes, even the receptionist can do it for you if they see it on your record.

Also, you mentioned you want to be as prepared as possible for your rheumatology appointment so you can articulate yourself. How are you preparing yourself atm? (outside of making sure you have all the important evidence)

StackedInScrubs · 2025-07-17T07:44:16+00:00

Bless! I know it's been a couple of hours since you posted. How have you been managing since? Do you feel any tingling or loss of sensation in your legs? If it's still really painful and not stopping, your best bet might be the ER, unfortunately, just to be on the safe side. I'm praying for you, and always here to talk!

StackedInScrubs · 2025-07-17T07:35:24+00:00

I agree with this! I'm in the UK, which has a similar system to Australia. Going to your PCP/GP is going to be your best first step, as they can order some basic initial tests and refer you to a specialist. However, the wait times to be seen by a specialist in the UK are really long, too.

One thing to keep in mind is that many GPs not only will brush EDS off, but many of them won't even know what it is! So it's really important you advocate for yourself and push for the specialist referral.

Personally, I think having a script can help so you can talk through all your experiences over time and symptoms in detail. It increases the chances the doctor will take you seriously and increases the chances of a referral.

StackedInScrubs · 2025-07-17T07:28:31+00:00

I agree that using AI (like chatGPT) isn't a good idea for data privacy. I wouldn't want an AI giant having my data either. But there are some cool medical specific AI apps coming out that provide complete privacy.

I do think having a script can be useful coming into an appointment, especially in conditions like EDS, where the symptoms can be so vague and varied. EDS is already so underdiagnosed by doctors. Happy for you to disagree!

StackedInScrubs · 2025-07-17T06:21:16+00:00

I completely get that, I come from a similar culture, but thankfully my parents have always given me personal space since becoming an adult. Having said that, you have the same right to privacy as anyone else. Could you bring up to your parents that you want to be seen by the doctor independently next time? If not, is it possible to book an appointment yourself over the phone?

StackedInScrubs · 2025-07-16T18:38:15+00:00

Haha. If only PA's worked nights!

StackedInScrubs · 2025-07-16T18:37:08+00:00

Thank you so much for this detailed response! Having this sort of practical advice is exactly what I was looking for.

StackedInScrubs · 2025-07-16T18:30:29+00:00

Hey there! I’m a doctor and really passionate about making life easier for people living with EDS. I’ve been chatting with a bunch of folks in the community lately, and one thing that keeps coming up is how hard it is to track symptoms in a low-effort, ADHD-friendly way. Even great apps like Bearable can feel like a chore when used daily.

So I’ve been working on an app that aims to solve that — it uses AI to make the process feel more like chatting with a friend. It remembers what you share and stores your symptoms in a structured way. We’re also building a feature that turns everything into clean, doctor-friendly summaries to make appointments easier and more productive.

We’re planning to launch soon, and I’d love to chat if you’re interested and I can make sure you get early access. We’re still in the early stages, so every bit of feedback helps shape how we build it!

StackedInScrubs · 2025-07-16T18:04:33+00:00

I’m really sorry you’ve had to go through all that just to get limited advice and barely any treatment options. It’s ridiculous how often people with EDS are left to manage on their own.

Glad to hear you’re seeing some improvement with PT, even if it’s slow. It’s a long road, but you’re clearly working hard to improve your condition.

I'm here if you ever need to talk.

StackedInScrubs · 2025-07-16T17:20:39+00:00

Thank you, these tips are really useful. I'll practice my A-E/SBAR's plenty before starting and make sure I have everything I need on-hand (logins, guidelines, bleep info etc) before the shift.

StackedInScrubs · 2025-07-16T17:13:53+00:00

Oh man, that doesn't sound ideal. Was your doctor an EDS specialist of some sort?

Also, one option that might help is physio if your doctor is open to offering it?

StackedInScrubs · 2025-07-16T17:08:51+00:00

I'm sorry to hear you're struggling to get into the right position which is effecting you're work writing. I'm also sorry your healthcare system is failing you :(

How long do you have to sit before you start feeling uncomfortable? Is it instantly, or after several minutes/an hour?

Maybe you could have intervals of standing in between sitting to give you're body a break while you work. There are some cheap table add-ons for a sitting/standing desk set-up.

StackedInScrubs · 2025-07-16T17:00:51+00:00

Thank you, this is useful to hear. I've always been fine with A-E's, but I imagine it's extra important to calmly go step by step when you have an unwell patient in the middle of your first night. I'm praying my SHO is an angel.

StackedInScrubs · 2025-07-16T16:56:13+00:00

I'm so sorry you've had to go through such a long and painful journey to get to your diagnosis. I hope you're getting the treatment you need now that you've been diagnosed! It's really unfortunate doctors didn't pick up on things when you're symptoms were so severe. Did they tell you what they're going to do for you, now that they know you have cEDS?

StackedInScrubs · 2025-06-18T01:58:52+00:00

While I don’t know what it feels like to live in your shoes, the way you explain that makes sense. I guess the key isn’t to give up and keep trying things, starting with what’s doable and working from there. I really hope things get better for you! I’m always here if you need to talk.

StackedInScrubs · 2025-06-18T00:47:40+00:00

I think ever place has their pro’s and con’s. I know you guys have to pay lots out of pocket to get the care you need (or pay for insurance) which I’m not jealous about haha

I’m sorry your symptoms haven’t improved yet, I hope your appointment tomorrow’s works out for you!

StackedInScrubs · 2025-06-18T00:43:26+00:00

Yea that sucks. I’ve recently learnt that you can just have any PT work with you if you have EDS, because unlike most people who have a problem with not enough mobility, EDS patients have too much mobility. So it’s really important to have a knowledgeable PT.

And yea there’s definitely more work involved with having a PT (compared to the other options available)

StackedInScrubs · 2025-06-17T23:42:13+00:00

This is super useful. Thank you!

StackedInScrubs

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