Anyone with Joint hypermobility or EDS?

[IwaslostinFrance]

I have mentioned to my GP on a few occasions that I wonder if I have, at the very least joint hyper mobility or possibly EDS but they always say no and that I’m probably just a very bendy person.

However, I have many niggling health issues which are just getting worse with age and I’m fed up feeling like crap all the time.

I have been super bendy since a child but not in a good way, it hurts to overstretch. I had to stop ballet as a child because it hurt. I can only walk for exercise, all other exercise hurts me.

I was born with double hip dysplasia (not sure if that’s connected or not?). I have had decades of daily and horrible digestive issues, I have had endless tests and they all come back ok. I’ve been told it’s just IBS and functional dyspepsia (have upper issues too and burp for England). I did test positive for small intestinal bacterial overgrowth last year and have read that can be caused by EDS?

I have also had decades of gynae issues. Years and years of heavy bleeding and recurring uterine polyps. I had a failed uterine ablation two years ago which has left me in pain. When I requested a mri it’s been discovered that I have endometriosis and adenomyosis (not sure if endo is related to joint hypermobility issues or not?).

I hurt all over and am fed up. I bruise easily, am constantly knackered and could sleep for hours. I often feel light headed when I stand up (especially from a crouching position). I have heel papules also and a very high foot arch.

I score highly on the online Beighton scale but because GP says some people are just bendy nothing is done about it. GP puts all my issues down to anxiety. I’m anxious all the time because I feel crap all the time!

I am pretty sure my poor mum has it. She has had years of pain, I’ve only ever known her to always be popping pain killers. She has foot deformities, has very unstable ankles and her knees go far back when she stands. She has a very bad posture and frame. She also has heart issues, osteoporosis, dementia and breast cancer. She has always suffered and no one ever told her why.

My ds18 was also born with hip dysplasia. When he was around 6 he started suffering from knee subluxation, a paediatrician said he’d grow out of it, he never has.

Dd16 is also very bendy, every day she has to ‘click’ every joint in order to feel comfortable (including the whole of her back). GP says this is just a habitual thing.

Can anyone relate to any of this?

I have added some photos. Am I just one of these super bendy people the GP mentions or is it worth pushing for more tests?

I am 51 btw and more bendy than anyone of my age that I know.

My dd was diagnosed with this by an excellent chiropractor. Could be worth seeing one?

Get an appointment with a physio.

i am not “naturally” hypermobile, I am just very bendy 😂

I had years of GP’s telling be I couldn’t be injured if I could stretch that far 😂

i was quite severely injured in an accident and it was the physio who brought up hypermobility and tested me for it.

I will look into seeing either a chiropractor or physio, thanks.

Hi - I was told I was hyper mobile 5 years ago by a physio treating an injury (car accident). Apparently I scored the maximum on the test.

I have always just thought of myself as bendy and really good at yoga!

Reading your post, I’m also always light headed when I stand, have adenomyosis, papules and have dislocated my kneecap twice. But I can’t say it affects me in general life. My children are extremely not-bendy so I’ll assume they’re ok.

Waaaaaa! Your little finger!!! 😱

I'm being investigated for a load of things atm, including hypermobility. I can't do that with my little finger.

I know this post is of no use to you whatsoever btw!

Can you see a different GP at your practice? That one sounds useless! An osteopath is another route. I find them much better than chiropractors.

Whoops, ours was an osteo, not a chiropractor.

See a decent physio. Do you also have flat feet?

I've got EDS. Recently diagnosed with all the same ongoing health issues as you. You can only get a diagnosis from the rheumatologist so you need to demand a referral.

Your gp sounds rubbish.
I was diagnosed with eds by a genetics team at hospital when I was pregnant. My mum was diagnosed the same day (I took her with me) and my dd was diagnosed at 2 years old. So many comorbidities, so much to write about.
All the things you refer to can be linked - as I’m sure you know.
You need to see a different gp.

I've heard good things about the hypermobility clinic in London, but they're private.

I have hyper-mobility but not actual EDS. I wasn’t made aware of this until I saw a podiatrist for a biomechanics assessment. I also found out at that appointment that I also have a leg length discrepancy.
I had always just thought I was clumsy and that everyone could bend the same as me. Even with the relatively mild form I have it has contributed to various health issues.
Get a second opinion. Your gp is clearly ignorant and fobbing you off.

100% a possibility! Unfortunately most GPs don’t really know what they’re talking about when it comes to HSD or EDS. I would ish hard for them to refer you to rhemeutolgy as they usually have more info and experience and will then be able to direct and refer to elsewhere as needed. Good luck! It’s a hard process to get diagnosed but worth it as it means you get a lot more support and physio!