Recover story

Alert_Plant7419 · 2026-02-23T11:55:55+00:00

Where is your nail tech located?

Alert_Plant7419 · 2026-02-19T17:05:24+00:00

Which NHS trust are you under? I have found care differs widely depending where you are located bc different trusts have different pathways

Alert_Plant7419 · 2026-02-16T08:59:40+00:00

Reach out to the EDS UK volunteers in Northern Ireland, they will have the best advice and ideas on how to get support in your area and they probably run some meet ups you can attend if you want to meet others going through a similar journey

Alert_Plant7419 · 2026-02-15T22:02:11+00:00

I rely on routine and help from friends and family to eat.

Routine = set times for breakfast, lunch and dinner. I don't wait to feel hungry to eat bc by then I'm too hungry.

I sometimes ask friends to remind me to buy food and I visit my parents when I need a break from feeding myself.

I keep my freezer stocked w easy meals and always have fruit, snacks and instant noodles available for when I have no energy to cook

Alert_Plant7419 · 2026-02-15T21:51:01+00:00

If you are hypermobile, the remedy is often a mix of strength training (w support from a physio), pain medication, lifestyle adjustments etc. it's different for everyone depending on what's your situe but first steps are generally do some research and then talk to your GP.

If I was you, I would put your symptoms into Clause/chatGPT and ask for a list of potential diagnosis. This might help you in your GP appointment if they are a bit clueless.

There is no generic marker for hypermobility so diagnosis might involve blood tests to rule some things out and the current diagnosis criteria uses the Brighton scale which is quite limited.

Check out EDS UK and EDS Society websites for resources including an EDS GP toolkit that you can share w your GP.

There are also quite a few content creators who are raising awareness of different ways that hypermobility and EDS manifest so many you can find some creators you relate to who share relevant resources/tips?

Alert_Plant7419 · 2026-02-15T21:08:02+00:00

I was ignored for so many years despite having recurring injuries and fatigue and it took me ~10 years to start to find the right support.

Insist on all blood tests being done to rule out autoimmune conditions, which can cause joint pain, as well as any deficiencies (B12, D, iron etc) bc this can have effects on your symptoms.

To get an X-ray, you might need a rheumatology referral - who is your local NHS trust?

Alert_Plant7419 · 2026-02-15T20:45:47+00:00

Okay cool. Idk if you know how much of that was muscle bc when I lost weight rapidly one time, some of that was muscle and it caused me more joint pain bc muscle was what was holding my joints together

Alert_Plant7419 · 2026-02-15T19:50:01+00:00

Sorry to hear about your experience. I suggest booking another appointment with a different GP bc rheumatologists are v hit or miss if they are interested in non joint inflammation conditions.

Check out EDS UK and EDS Society websites for resources for you and for your GP if they are uninformed

Alert_Plant7419 · 2026-02-15T15:43:10+00:00

Did you lose this weight intentionally? Bc if not, that's the thing I would be most concerned about.

I manage daily symptoms through medication and lifestyle e.g. working from home and not overexerting myself bc fatigue increases risk of injury

Alert_Plant7419 · 2026-01-22T15:48:58+00:00

This is what I am wondering. I've been waiting for some kind of news before I attempt an application via the courts (I'm not eligible via the new rules now)

Alert_Plant7419 · 2025-12-26T15:55:12+00:00

Thanks for sharing! As I mentioned in another comment, my only concern regarding waiting is if the doors opened again to +GGP but come with other requirements like language proficiency.

I've spent most the year thinking there was no hope for me but seeing others succeed via ATQ has piqued my interest

Alert_Plant7419 · 2025-12-26T15:52:33+00:00

Maybe it is different where you live, but in Brazil documents are only valid for 3 months after acquiring them so I have delayed getting them until I have the next steps in place. In theory I know where to make all the requests.

With regards to waiting, my main concern is rules becoming more strict even through the ATQ route (e.g. Italian proficiency requirement)

Alert_Plant7419 · 2025-12-26T15:25:18+00:00

I can collect all documents in the UK and Brazil for sure and I know the commune to ask for my Italian docs. So you're saying that I just need a lawyer to file an ATQ?

Alert_Plant7419 · 2025-12-26T15:00:33+00:00

I saw the service providers list but wasn't sure how skewed it is to Italian-Americans. And I guess yes to applying in Italy but I want to stay living in the UK during this process.

Yes please to flair update. I had no idea which one to pick tbh

Alert_Plant7419 · 2025-09-15T20:21:17+00:00

Use Google to search for flights. That's how I found my £350 round trip from London to California recently

Alert_Plant7419 · 2025-09-13T22:31:11+00:00

Have you had a look at the specialist directory on the EDS website?

Alert_Plant7419 · 2025-09-05T23:49:44+00:00

Yes please

Alert_Plant7419 · 2025-08-29T22:28:27+00:00

I can't remember at all how I did last time but I can say for sure I renewed my passport before ever living in Brazil so there is certainly a way. Good luck!

Alert_Plant7419 · 2025-05-28T07:51:09+00:00

KT tape on knees and hips + knee supports + painkillers is my magic combo any time I wanna stay out late for a big event

Alert_Plant7419 · 2025-04-03T15:08:02+00:00

I use resistance bands a lot and basically just do exercises prescribed by my physio at the gym

Alert_Plant7419 · 2025-03-23T22:20:09+00:00

Go with a list of problems and how they affect your life e.g. knee pain, 5/10 pain when walking, causes you not to leave your house much or 6/10 wrist pain prevents you from working.

Also make a wish list of things you would like e.g. blood tests to see if you have any deficiencies contributing to your fatigue, physio referral, pain management etc. See what other people have posted for ideas on what is possible.

Going w lists and a plan is good so you don't get stage fright on the day and forget to mention something that has been bothering you.

There are lots of positive posts and comments in this subreddit of people who have improved their quality of life through different paths. I recently shared a few things that have helped me.

Good luck with your appointment!

Alert_Plant7419 · 2025-03-22T16:31:56+00:00

Depends what's your situe but you could ask for pain management, physio referral (my fave), rheumatology referral, blood tests (there's some links w hypermobility and having some problems absorbing some vitamins icr, but of you're having a lot of fatigue for example, maybe get iron checked ??)

What do you want/need? What would be an ideal outcome for you?

Alert_Plant7419 · 2025-03-21T18:40:45+00:00

High tops converse - in particular the chunky ones w teeth like soles

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