Is there any point in trying to get an EDS diagnosis

[QuintanaRoo]

So Dd is officially diagnosed with EDS. I took her to see the gp a few years ago and said I thought she had it. Gp was very sceptical as she can’t bend her fingers back overly far but I said I thought she scored 5/9 on the beighton test so he referred her and sure enough she has it.

Over the last few years my health is declining with weird symptoms. So I’ve had an ongoing ankle issue for 5 years and one of the best ankle surgeons in the country says he’s stumped as to why I’m in so much pain. I’ve had surgery to repair a torn tendon, had bone cysts removed and am still in agony and struggling to walk. I’m currently waiting a further CT scan and they said they might do more surgery as I keep saying I feel like my tendon dislocates but he’s adamant it doesn’t

I have terrible bladder pressure, pain for over ten years and am under the care of the LUTS clinic in London but no better.

My elbows and knees bend the wrong way.

I have intermittent but extremely painful back issues. Went to see an osteopath recently, hadn’t mentioned anything about dd or my knees/elbows and within 5 mins he was asking if I can bend my fingers right back. He says he has a specific interest in eds and he’s a 100% sure I have it. He reckons he can tell from how my muscles feel. Said I’m far too mobile in my pelvis which is what’s causing my back issues.

So now I’m wondering if it’s what’s causing my ankle and bladder issues.

Ive read it’s now GPs who are meant to diagnose…..that they’ve been told to stop referring to rheumatology which is who diagnosed dd. I’ve not much faith in the GP as he didn’t think Dd had it and was wrong. There’s no treatment for it, dd just got given a leaflet. Well I know enough about it anyway. Don’t need a leaflet. And I’m worried every issue I may have in the future plus my ongoing ankle issue will just be put down to EDS and I’ll be told to go away and deal with it…..that they’ll write me off without proper investigation. I’m sure if I told my ankle consultant I had EDS he would discharge me immediately! But then I also don’t want further surgery if it is the EDS and another operation won’t help.

Oh and I only score 4on the beighton test……if I was 3 years older it would be enough for a diagnosis but at 47 I need to score 5. Do I wait 3 years. I’d get 4 for knees and elbows, I used to be able to touch the floor with my palms while straight legged but my back is so bad I can’t now.

loads of other low key stuff like poor wound healing but none of that is on the beighton test. Clicky joints, bruise easy.

I score 8/9, have POTS, MCAS, migraine, prolapse, ankle surgery etc and still 'only' diagnosed with hypermobility syndrome, since they revised the diagnostic criteria they now only diagnose EDS with clear vascular involvement.

The only benefit to any diagnosis has been hospital rheumatologist referred need to specialist hypermobility pain/management clinic which has been life changing. And perhaps being believed by some when I say I am pretty hard to anesthetise (took 5 top ups for a recent biopsy and stitches).

The best thing you can do is read up on mindfulness for pain and have a go, for us pain can often be as our brains have got 'stuck', and stress makes it wise y. Accepting this and acknowledging it can make it reduce considerably.

Also, surgery often not recommended as it's the collagen that's at fault, so joints often stretch back to their pre-surgery state, gentle exercise is more helpful.

Yeah I’ve read about a lot of people being cross that they get diagnosed with hypermobility and not EDS. Dd doesn’t have vascular involvement that I’m aware of but when she was diagnosed you could either have vascular eds or hypermobility eds. as well as some others.

But it’s good that even just with the hypermobility diagnosis you’ve had some benefit. They’ve done nothing for Dd. She’s back and forth to the GP in pain, struggling to eat, etc and they just shrug.

Yes, I was wrongly diagnosed with fibromyalgia.

Got my EDS diagnosis, they've taken me a lot more seriously since. I've had problems with my spine before I'd be batted off with "you're fine it's just fibromyalgia!" Now they actually do scans. I've seen the pain clinic who were a god send.
I have pyshio which helps, seen a OT who came out to my house, got f all help before hand.

I had friend diagnosed at age 34. It made a huge difference to her as she finally had an answer to the many issues she'd been suffering with. She joined groups for EDs suffers so they could compare tips, advice etc and not feel so alone. Would it be worth your daughter joining a group? They may be able to sign post other places for support. My friend ended up claiming PIP and getting a disability car and support dog. She had to fight for it but it made a massive difference to her life x

To be fair through often hypermobility does go with fibromyalgia which makes sense, so the fibro management can be helpful (have done for me). For me the fibro is secondary to the JHS, I think fibro diagnosis is less helpful when no one is thinking about potential causes

DD has no vascular involvement and was diagnosed in the last 12 months. She was referred to rheumatology who diagnosed. It's meant she has regular rheumatology appointments, support from cardio for POTs, separate support for gastro and MCAS issues, pain management, physio and occupational therapy. Plus dispensations and support at school.

Diagnosis was well worth it.

Wow, dd gets none of that. I can see if you get that sort of support it would be worth it but I know the best I’d get would be a leaflet and then discharged. Crazy that nhs provision is so different in different areas. She’s also got POTS and mcas and fibro, loads of gastro issues. Her weight is down to 45kg as she can’t eat and still they don’t do anything 🤷‍♀️

Well I have an appointment in two weeks time with the GP…..same one who incorrectly told me he didn’t think Dd had eds. 🙈😁. So we’ll see how it goes.

I was just reading an article about eds and ankle pain and the description of the weird ankle pain was like they were describing my ankle completely. I’ve always struggled to describe the sensation and all the doctors are as puzzled as anything. It’s like a lightbulb going off, that it makes sense that it’s eds causing my issues rather than it been a bone or tendon problem.

How did you get on?
I understand the frustration as I got diagnosed at 42.
Have you seen this book...

No, haven’t seen that book so will have a look. My health seems to have nose dived so badly, I’m in so much pain just standing. Was a the British museum the other day and managed less than an hour as just ached so much.

GP says I have EDS, however he is referring me to a rheumatologist as he said he wants it confirming which type I have. He doesn’t think (and I certainly don’t) that there’s any vascular involvement but he says he wants to make sure. Said to expect a year wait for an appointment.