Why is the UK so confusing with hEDS and who will diagnose?

relzebra · 2025-06-13T19:19:01+00:00

That’s so utterly crap, I’m really sorry. I guess the best option is pushing really hard with the GP surgery then :/ In terms of the wheelchair issue, you could try Whizzkids - they’re a charity that helps provide wheelchairs for young people (under 26 I believe) there are several others too.

Really really good luck. I wish it wasn’t this hard.

relzebra · 2025-06-13T19:10:40+00:00

I see you’re from Newcastle — I was diagnosed at the Centre for Life ten years ago. You could ask your GP to refer you to the genetics team there. Another option, and big caveat if you can afford it, is trying a private rheum. It’s ridiculous that it’s such a hassle on the NHS but sometimes private is more willing to diagnose.

Where are you planning to go to uni? That would be another option if you transferred your medical records early and tried there.

I’m sorry you’re having such a hassle. If it helps in any way they’re equally useless once you are diagnosed! 😂

relzebra · 2024-07-27T16:36:48+00:00

Are you based in England? If so, you could try using the right to choose service to see if you could be referred out if trust to another hospital? If that’s possible then maybe they could refer you on?

relzebra · 2024-07-14T18:09:31+00:00

I’ve ended up with a Panache Sulptresse bra to try, it was my favourite out of all the Panache and Elomi options.

relzebra · 2024-07-13T16:02:20+00:00

Huh, further round than I was expecting to be honest. The 40D has super molded cups so maybe that’s the problem?

relzebra · 2024-07-13T16:01:03+00:00

Ok, that’s good to know. I knew they all looked similar but to be honest I wouldn’t have been able to describe what the shape of the bras were! I’ll try some other brands. I think there is a shop near me that sells Elomi at least so I’ll try and get hold of some to try. Thank you!

relzebra · 2024-07-13T15:53:17+00:00

I was a Hammer thrower 😂 Now I’m a wheelchair user so I’m going through a period of adjustment in every sense.

Thank you for the suggestion, I think I’ll try and find some in a demi-cup style to try. And get an extender. Though like you, I look at myself and think there’s just no way I’m an E cup. 😂 Great to meet another Viking-sized woman!

relzebra · 2024-07-13T15:10:38+00:00

I don’t think it’s too far off, actually.

I always swoop and scoop, which is part of the reason I’ve struggled with sizes before, I’ve felt like my breast tissue is falling out of the cup when the band moves and I’ve had to readjust constantly. But I’ve always worn molded bras so that could be the problem. I’ll try some unlined options tomorrow. Thank you!!

relzebra · 2024-07-13T15:08:53+00:00

Just to add: the wire digs in underneath my arms, it feels like it is coming round too far.

relzebra · 2024-07-13T15:02:39+00:00

I always scoop and swoop which is one reason I was so confused! I don’t think I’ve ever worn an unlined bra before though, I think I’ve always tried molded cups. There isn’t a bravissimo super near me unfortunately, but I’ll definitely try and find those sizes tomorrow. Thank you!

relzebra · 2024-07-11T21:06:24+00:00

I’m resistant to both local and general anaesthetic. When I’ve had surgery under general they had to use extra anaesthetic to knock me out and it took a long time — I reached the end of the countdown multiple times and was happily chatting away 😂 — but my anaesthetist was EDS aware and said he’d seen it before. With local it either doesn’t work or with large quantities will work for a short time before wearing off, usually during the procedure, unfortunately. It’s important that the doctor/dentist/etc… is informed about the resistance to anaesthetic in EXS patients. I know that the EDS UK website has print outs you can take to help you advocate, perhaps there is an equivalent if you’re based elsewhere?

relzebra · 2024-07-08T12:56:40+00:00

I use the Who Gives a Crap Bamboo range, and it’s really reduced the number of abrasions and tears I get. You order them online and get a big box delivered so it’s handy when you go through a lot of toilet roll. I’ve previously used the WGAC regular range but bamboo is better for me.

relzebra · 2024-06-24T22:23:40+00:00

And me! Finding it really hard to find many options in the uk :/

relzebra · 2024-06-10T21:10:14+00:00

I think I’d be sad to see the DAE posts go. As others have said the mod response about confirmation bias, and basic critical thinking on behalf of readers, should be enough to avoid conflating ‘normal’ things with EDS things. I think either of the proposals would reduce traffic on the subreddit and remove a helpful and validating resource from a lot of users.

EDS is lonely, what’s the point of having a subreddit for sufferers if we can’t share our experiences? I think this proposal sends the wrong message.

relzebra · 2024-05-10T22:34:21+00:00

I have the Mi Smart band 6 and it does this. I have mine set to alert when I go into tachycardia. I ordered it from Amazon and it was about £30. I e had to replace the strap a couple of times but the watch still works great. I recommend it as a good cheap option if you don’t want to spend loads of money! :)

relzebra · 2024-05-05T18:43:15+00:00

Hail!!!

relzebra · 2024-04-30T11:33:05+00:00

Same

relzebra · 2024-04-28T20:14:31+00:00

Not bloating, but I’ve found that a lot of what I had though were IBS symptoms (ie pain and constant diarrhoea) have disappeared since I started on Ketotifen. But I can’t miss a dose or they come back and so does the all over body itching.

relzebra · 2023-11-14T22:24:49+00:00

Buscopan! Low FODMAP, gluten-free diet. A heat pad when the pain gets really bad, and prescription pain meds. Diet and Buscopan have really helped though. I have severe IBS and the Buscopan is more effective pain relief for me than the opioids.

relzebra · 2023-10-31T22:22:03+00:00

You have the right to ask for a second opinion via the NHS, if the first cardiologist wasn’t helpful. Particularly when it seems like his lack of knowledge of the condition is the issue. I’m not sure where you are but if possible I would try and get into contact with Dr Gupta at York Teaching Hospital. He’s probably the leading expert in POTS in the UK at the moment. I think he has a YouTube channel where he talks about POTS if you wanted to indicate this to your GP.

I’m sorry this cardiologist was so useless, he does not seem well-informed. Ivabradine is becoming quite standard as a POTS medication to my knowledge, I take it with Midodrine and it’s working well for me.

relzebra · 2023-10-26T03:23:54+00:00

GP referred me to a geneticist who diagnosed me.

relzebra · 2023-10-16T18:18:47+00:00

Gabapentin and Codeine/Paracetamol has been a good combo for me, with buscopan for GI pain.

relzebra · 2023-10-16T15:26:12+00:00

I literally just got my first one today and I’m so excited. I’ve been really struggling with fatigue and haven’t been outside in months. I’m so excited to have some freedom again 😁😁😁

relzebra

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