EDS Discussion & Support thread

[Innocenta]

Following some talk about a discussion thread for EDS, here we go!

EDS discussions very easily turn into 'diagnose me please' or woo about less than proven connections to other issues, so let's try to stay semi on topic if possible? But that said, obviously all welcome and people can probably pick up good tips from more or less severely affected EDSers.

My friend has EDS. She is a personal trainer and sports rehab therapist. I think this career option has been very helpful to her because she is able to do a lot of her own physio to prevent dislocations and other problems.

Dd has diagnosis. Affects her a lot but she is managing to go in for her GCSEs.

Good luck to your DD in her exams! @maudesvagina

Hello

finally diagnosed two weeks ago by rheumatologist after years and years of go appts for things that no one ever joined up (despite me saying I am hyper mobile every time) until I had a gastro appt by phone that NHS had farmed off to private hospital and Dr’s first words were from looking through my file he suspects EDS for all the things I’ve presented with over the years.

Biggest issues are pain/fatigue and fear, every person in my family has died before their time from heart/stroke, but recent echo was fine. My mum also deteriorated rapidly post meno, lost 7 inches height due to hunch caused my ligaments collapsing and I am starting to hunch. Hasn’t helped that the diagnosis came whilst I’m recovering from ankle ligament surgery so just feel I’ll never be mobile/able to do anything ever again.

Had anyone here had success with duloxetine?

Coeliac plus thyroid disorders are quite common together (comorbidities) and also common in Zebras.

I first found out about EDS on a thyroid forum and mentioned it to my endo who suggested a specialist for my daughters.

Up until I was prescribed T3 I had the worst constipation. (Won't go into details but it restricted my life somewhat.). My endo said I was not to go telling anyone that t3 is a cure for constipation as everyone will demand it. It's extraordinarily expensive on the NHS but tuppence a bucket-full in other countries. I have autoimmune Hashimoto's. This also cured my depressive tendencies,
my body felt warm for the first time in my life, and it levelled out my intolerance of other people 🤣. I can certainly tell if I ever miss a dose and so can my family. I think it balanced everything hormonal.

The menopause is something else though ....
the heat!

We can definitely discuss our comorbidities and share tips, but need to be careful talking about what is proven or suspected as a link with EDS.

Good to hear about your recent echo being clear! I haven't tried duloxetine myself as I am vegan, but I know other people who have found it helpful (anecdotal, obviously😂). @Matchingcollarandcuffs

Thank you, @Innocenta , the www is only full of scare stories!

And @MyOtherCarIsAPorsche interesting about T3, they did full blood but don’t share the results but may post for private, I am all those things. I am also old, tired and fed up so it may have no cause. DS13 had such chronic constipation he had to be admitted for fortnightly enemas until he was nearly 18m, DD has gone the opposite way.

gastro has put me off having a colonoscopy unless really necessary as apparently v painful in zebras.

@Matchingcollarandcuffs An awful lot of talk on the internet is alarmist and dramatic! If you need to be scoped they can do it, though of course it isn't pleasant to have any procedure. If you get Iv sedation you won't remember much if anything.

@Matchingcollarandcuffs

My daughter is the opposite way.

She was diagnosed BAM and also IC before she got the hEDS diagnosis.

Just wondering what information needs to be given to the paramedics?

Dd21 has just recently been diagnosed with hEDS and probable POTS. I had suspected it for quite some time after some research but the ortho consultant we went to was very dismissive. He informed her, without actually checking her skin, that as it's not elastic she doesn't have EDS. He still gave her the letter she needed for uni so we didn't follow up at the time.

I found a rheumatologist who has an interest in EDS so she went to him recently as she tends to keel over every so often so we figured it was no harm to get a diagnosis. Turns out she has pretty much every symptom of hEDS, including stretchy skin. He doesn't have the tilt table necessary to diagnose POTS but he's pretty sure she has it. He also said pain killers don't work for her, which is why they don't touch her periods. She has to take salt tablets when exercising as her heart rate goes ridiculously high.

She had moved to a mirena to deal with her period pain but ended up with a prolapse from it. She has been to a women's physio who specialises in pelvic floor and she went through the exercises and gave her a pessary thing to use when lifting heavy things etc.

I'm hoping that you lovely people will be able to help us figure out what she needs to do, what she should look out for and so on. She manages her pain by limiting standing around and walking. She works on her core, which really helped with the subluxating shoulders and clavicle. She wears knee supports when doing anything likely to cause issues there. She's only had one dislocation so far, which isn't too bad I suppose.

Both my ds' are hyper mobile but neither have pain so I don't know if they have EDS or just hyper mobility.

Just wondering why people are referring to those with EDS as zebras?

The Dr used the stretch marks on my stomach as part of my diagnosis!

Actually it’s this - and sums up why so many wait so long for diagnosis

www.ehlers-danlos.org/about-us/charity-aims-and-focus/why-the-zebra/

Makes sense. Dd has stretch marks too.

With most patients, doctors are taught "if you hear hoof beats thinks horses not zebras" so it's normally the most common/obvious answer that is correct. However, as EDS is rare and difficult to diagnose we are known as the zebras.

I'm diagnosed with hEDS. Been especially suffering with it over the last year, although had symptoms since young, has been affecting my life in a major way now.

Also makes sense

I'd suggest being very wary of the Ehlers Danlos Society. It's a pretty unethical org and a lot of EDSers have issues with it

I'm really sorry you've been feeling worse, @Mrsweasleysclock ! Do you have a supportive GP?

@OchonAgusOchonOh Many EDSers wouldn't need a medic alert bracelet, but it can be useful for those with vascular problems or frequent faints, dislocations, etc.

The zebra thing is a bit contentious! Some people LOVE it and really relate to the idea, others find it cringey. It's for everyone to decide for themselves and use the identity markers that feel right. Like 'spoony' / 'spoonie'. None of this works for me or most of my close friends with chronic illness, but I know it brings very real comfort to other people and I wouldn't want to take that away.

I don't want to name all my doctors publicly on this thread (don't mind mentioning Prof Aziz as he is such a prominent EDS doc, haha), but I'm happy for anyone who wants their names to PM me. I am in the South East of England.

DD is 12. Twice been confirmed not to have juvenile arthritis. Paediatrician is pretty sure EDS but I've not managed to get that confirmed.

She's hyper mobile. Has woken numerous times this year with swollen joints. We've given up on participation in school sports, though I'm hoping at some point to work with a physio again. A couple of years back she had mris on both feet due to swelling and pain and one was found to have two broken bones.

At this point we can't tell what a diagnosis will change.

She does tend to faint but thankfully doesn't have the vascular version of EDS. She was scanned for that years ago when her shoulders started subluxating.

Should she have something for the faints? Is it just so they don't bother running loads of unnecessary tests or is treatment different? Last public faint was at work and resulted in her being shipped over to the ED (she works in a hospital).

I don't understand the spoony reference either?

Sorry for all the questions I'm new to all this .

Really? I'd not heard this.

I've got a JHS/HSD diagnosis, and I'm off to the rheumatologist tomorrow to discuss whether my joint paint is entirely HSD or if I also have psoriatic arthritis. So that's fun.

@OchonAgusOchonOh Please don't apologise for asking questions! It's what the thread is for.

I would definitely encourage your DD to have a full work up for POTS or any similar conditions (there are others that overlap a bit), as it's likely that full treatment could get her fainting under control and make her more comfortable.

This is the spoon thing:

health.clevelandclinic.org/spoon-theory-chronic-illness/