Anyone with experience of joint hypermobility or EDS?

[Afternoonsnooze]

I have some long standing health issues and I’m trying to see if they may have a connection. I wonder if I may have a joint hypermobility or even, possibly, EDS issue?

I truly believe my maternal grandad had joint hypermobility and my mum too.
I’ve only ever known my mum to be in daily pain/discomfort. Both she (and grandad) have/had heart issues, but issues and ‘bendy’ joints. When they stood, their knees would bend back much further than the average person. Mum’s ankle would regularly dislocate and she even broke it a couple of times by doing this. She also has the most awful flat feet which have ended up growing in a particular way caused her nothing but pain and issues getting shoes to fit. She has never been diagnosed with anything other than osteoporosis and sick sinus syndrome so needs a pacemaker (Sadly, she now has Alzheimer’s). Grandad died from heart failure, after years of heart health issues (never smoked or drank).

Anyhow, I’m now 51 and for as long as I can remember I have always been bendy but not in a good way. I am often very achy, even as a teen I would ache like crazy after a day out shopping. I had to give up ballet as a child as it hurt my feet so much.

For as long as I can remember I have had some sort chronic health issue and can’t help but wonder if it all maybe connected to a connective tissues problem.

Can anyone relate to any of my symptoms?,

Born with double hip dysplasia
Since mid 20’s I have had constant (daily) upper and lower digestive issues
endless gastro tests have come back clear (thankfully)
TMJ disorder and regular jaw discomfort
Tinnitus (not sure if there is any connection there?)
Clicking joints (particularly toes, elbows, jaw etc)
Very achy joints and muscles
Chronically (and easily) fatigued
Bruise easily
Papules on heels when standing (not sure of this is relevant)

Also, after 25+ years of gynae issues I have only just (at the age of 51) been diagnosed with endometriosis.

DS18 was also born with hip dysplasia and has had subluxation of his knee since early childhood. However, paediatrics said nothing wrong with him?!

I have spoken to the GP about all of this in the past but they don’t really take me seriously and says to take pain relief.

Does anyone with joint hypermobility experience any of this?

(I’ve added some pics of my ‘bendy’ joints, not sure if this is abnormal or not but neither my dh or friends can do this so who knows?)

All of my joints are at least as bendy as yours and always have been. In my 50s now and the only health issues I have ever had due to it is some arthritis. Not much help I know so sorry!

My DD has that, and my neice who gets PIP it's so bad with her. Do yoga not Pilates is all I can advise. It sucks

The UK eds society have lots of information
www.ehlers-danlos.org/what-is-eds/

The Beighton score is used to assess hypermobility - have a Google and see what you score!

The first step would be to ask the GP for a referral to rheumatology to properly assess.

whirlyhead think this is why I’ve always held back from persuing it further as I’m not sure if it’s fairly normal to be bendy. I suppose I’m just trying to tie up all the other issues together and it got me wondering if there is some kind of connection?

anythinginapinch are they both diagnosed with EDS? I did yoga for 10 years but have given up as it caused me so much discomfort, I feel better off just walking as exercise. Pilates killed me lol!

Thanks handmademitlove

I was recently referred to physio for balance issues, turns out I have hypermobile joints. The exercises have made a world of difference to me. He actually came out to my house and we ran through some things that I find tricky to do and he worked out a plan for me to adapt.

Dd has EDS and POTS. It is very common to also have POTS if you have EDS. She doesn't have digestive problems but does have gynie problems. She can't walk out stand for extended periods without severe pain.

She had been to a number of orthos with subluxating joints, all of whom were useless. If you can't take a knife to it, they don't want to know. We found an excellent physio who really worked with her on her core and resolved the subluxating.

I always suspected it was EDS rather than just hyper mobility so did some research and found a rheumatologist who has a keen interest in EDS (he doesn't describe himself as an expert) and he diagnosed the EDS and POTS. He also advised her to take salt tablets for the POTS. She has a tendency to pass out so is getting that investigated and is also getting checked for endometriosis but it is likely that it is the EDS causing the pain.

I would advise finding a rheumatologist who is interested in EDS and a physio who understands hypermobolity at least and preferably EDS.

This runs in my family and had hit my DDs the most. We had DD1 officially diagnosed when she was 11 because of issues very similar to yours - couldn't hold a pencil in position for long due to bendy fingers, exhaustion, no core strength, flat feet, bendy ankles and knees etc. the right person to diagnose hyper mobility is an Occupational Therapist.

I have flat feet, bendy ankles, injured knees, exhaustion, digestive issues.

Collectively our list is long and we spend a fortune on shoes and custom orthotics.

It's one of those where a proper diagnosis can be life changing and allow you to understand your limitations and adapt to them. Good luck!

You certainly look and sound like you have EDS. I’d go back to the gp armed with your self scored Beighton score and tell them you would like a formal diagnosis. According to the gp toolkit they should now be diagnosing you themselves rather than referring you to rheumatology. However even when you get a diagnosis ime there is no help, no treatment, no nothing. Dd has it, I have it. I’m sure dd has gastroparesis, she has such stomach issues but gp won’t refer to gastro. You do just get told to take pain relief and told to put up with it. But a diagnosis does make a difference with hospital appts, surgery, etc. anaesthesia take it a bit seriously. When Dd had a PE they were concerned about her pre existing EDS. So maybe in a&e, etc people might just be more thorough with you if you have a diagnosis?

But I do agree it helps you understand your issues and limitations and how to deal with them. It’s kind of nice to be able to say to people I have a condition which causes these issues, I’m not just been a moaner. It also means I’ve stopped chasing orthopedic diagnosis for weird ankle problems as I realise now it’s 99% likely the EDS causing it so the surgery I had which didn’t fix the issue was unnecessary…..if I’d had my diagnosis before maybe I wouldn’t have had the surgery. I see a good osteopath private, I have custom shoe orthotics and I now spend 3 hrs a week weightlifting to build my muscle strength up.

Hey Op! Bendy here too. Diagnosed hEDS

This toolkit helps GP's to diagnose adults. Although not all will want to 🙄 I understand Rheumatology are no longer accepting referrals for hypermobility too, which makes it more difficult to be properly diagnosed.
https://gptoolkit.ehlers-danlos.org/

Look up Emma on Twitter. She designed this brilliant toolkit. Good luck!

https://x.com/DrEReinhold?t=Gp6385I0LLwkdOQWyXvTfA&s=09

It’s slightly tricky in that hypermobility is not uncommon - particularly in the female population, hence the PP above merrily saying her joints look like that too. The distinction comes with pain & comorbid issues. From what you list, it sounds more likely to be a form of EDS, or possibly HSD. Pursuing a diagnosis seems sensible - at the very least a speedy referral to orthotics sounds as if it’s indicated to ensure you don’t need anything beyond specialist insoles.

Could be. I think DS has some level
of hypermobility and a private physio believed he did, but I could never get him a rheumatology appointment in the nhs - GP would refer and it would just result in physio again! He’s had painful
lefs for years now, since puberty, hence the physio.
He’s at uni and still having issues including his gut - he’s got a GP appt on Tuesday for this.
We are Ashkenazi Jews and it’s very common with our lot (as is tte BRACA gene mutation), which I only found out recently. Looking back it was obvious my late mum was hypermobile but she just called it double jointed. I do remember her factoring and spraining her ankles a lot!

I have hEds and another ctd. All 5 females in my family seem to have it with DD and myself diagnosed by rheumatologist with pots comorbidities. Sometimes I feel like I'm made of lead & being crushed. I'm being referred to pain management but thinking swimming may help. There's some excellent advice on here op & your joints do look similar to mine & do try to get a rheumatology referral. Very interesting @Goatymum . I didn't know that and although I'm not Jewish by religion, my heritage is Ashkenazi on mums side (Grandfather). My ex h has it too with very bendy back legs & prone to shoulder dislocation. My rheumy is Ashkenazi and has heds, and has had shoulder dislocation. Wow, you learn something new every day. Good luck op.

Hypermobile here - I have a fantastic physio & pilates instructor who drills me learning not to over-extend my joints (no matter how good or natural it feels) and focuses on exercises to support & strengthen them.

Agree with pp to request referral for formal diagnosis

Definitely sounds like EDS.
In contrast to a previous poster, a family member who has EDS was told absolutely not to do yoga as that encourages over extending joints but pilates was good as that builds strength. She was also told to swim lotsas that also build strength without putting undue pressure on joints. With regular swimming and strength training she is better now than she has ever been.

Sounds like it to me too. I have been to a private podiatrist who specialises in EDS and hypermobility, and she's made orthotics that were much better than the NHS ones. I have the heel papules too and she said that was related. And fragile skills that blisters easily.

Yes, I've been told the same.

I love yoga but have given it up until I get better at not overextending.

Also find that I tend to slip into overextending in general movement when I'm tired / stressed etc. The more in-tune and connected to my body I am, the better I am at maintaining my joints, so relaxation exercises help too.

Sounds like hEDS in my experience.

I highly recommended Dr Brennan at the Inherited Disorders of Connective Tissue clinic if you are able to pay for a private consultation.

He gave me a diagnosis in one consultation after being told by other doctors I didn’t have it.

https://idct.co.uk/

Those photos are unmistakable and do show hypermobility. Both DH and DD have it, but theirs is the benign variety 'benign joint hypermobility syndrome' and doesn't affect them in an adverse way at all. They just have joints with a much greater range of movement than most people. I don't really know much about it otherwise.

You do need a proper diagnosis, I think.

My friend has EFS and you sound quite similar to her OP. She is actually a Pilates instructor and that helps her. Not sure why PP has said to do yoga and not Pilates.

EDS obvs not EFS

Thank you everyone. Your experiences and advice have certainly given me the push I need to look into this further.

I’m glad to hear it OP. It certainly sounds like (h)EDS; & I hope that you’re able to get answers & access appropriate treatment. (Well I’d quite like the latter for everyone with all forms of EDS, but the NHS isn’t very well set up for us.)