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Hypermobility/Ehlers Danlos Syndrome

79 replies

GoogleDoctor · 05/03/2021 14:09

DD and I recently ended up at a podiatrist, who has assessed both of us as hypermobile (palms on the floor with knees straight, thumb back to wrist, etc). I've thought for years I was flat-footed, but was shown that I wasn't - it's my ankle joints being loose and slumping inwards that gives that impression.

The podiatrist then demonstrated how dodgy our hips, knees and ankles are, and how much the issue is affecting our postures. We're currently in the process of getting orthotics to try and correct some of the issues and reduce pain.

In the meantime, DD is also being assessed by the GP for very heavy periods. I suffered the same issue with short cycles and heavy blood loss, but with no obvious cause (fibroids, etc). I ended up having an endo ablation which didn't stop my periods, but has brought them back to manageable levels.

On one occasion I asked the GP whether there might be any connection between the two issues. And, because of the apparent genetic inheritance of the conditions, I wondered about possible Ehlers Danlos Syndrome (EDS).

However, I was cut off and bluntly told no. There are other things in my history that I thought might be related, but I didn't get chance to mention them. Honestly, I was a bit stung from being shot down so quickly and ushered on my way.

My joints pop and snap pretty much every time I move, and they're getting more painful as I get older. I've discussed with my DH and some of the pain I consider 'normal' apparently isn't normal at all. Doesn't everyone's feet and ankles hurt when they jump, and the hand and wrist hurt as they write? Shock

I'm clumsy, I never seem to know where my body parts are so bash into door frames, door handles, tables and similar. I then bruise very easily - my thighs, calves and wrists are always colourful! I frequently get bruises that I have no idea where they came form.

I tend to be fatigued a lot, which gets dismissed as anaemia and/or being a working Mum. Constipation has always been normal for me, no matter how much fibre I eat or lactulose I drink. I heal slowly, but maybe I'm just getting old. (Late 30s.) My skin seems soft and youthful, but perhaps that's just luck or wishful thinking!

I give birth ridiculously quickly: both times it was under 4 hours from the first contraction. I went from being told I was only 2cm dilated to holding a baby in a matter of minutes. I've also been diagnosed with Reynaud's Syndrome.

However I don't seem to have dislocations. Certainly not the 'arm hanging out of its socket' type, but who knows what goes on in my joints when they go 'pop!' as I move. DD has also not had any dislocations, to my knowledge.

Does any of this sound like EDS, for those who know of the condition? Or does the lack of dislocations mean that is definitely not the issue?

Should I be pushing harder for a GP to look at the whole picture? Or is the doctor right to not even consider it and I'm just wasting their time? i.e. The issues are completely unrelated, I'm old, we're just a bit bendy, and I should step away from Dr. Google.

OP posts:
Thedishwasherstacker · 17/10/2021 12:07

This is so very interesting for me as I have been looking into this recently.
I have had issues for most of my life (now 48), I was born with hip dysplasia, very ‘double jointed’ as a child but would also get very painful part of my body. My part trick (and still is) is that I can bend both thumbs to my wrist. Around 9 I started ballet but had to give it up as it killed my feet, too much stretching would really hurt even though I was extra bendy.
When I was a teen, after a day walking about shopping I would be in agony in my pelvic and hip area, just from a Saturday shopping trip.
I have had gut issues for years and years but it’s always just put down to IBS although a gastroenterologist told me last week there is a definite connection with EDS and gut problems. I have also had years and years of gynae issues and dsis was recently diagnosed with endometriosis (not sure if this is connected?).
I am certain my mum and my grandad (her father) had some kind of hyper mobility problem, when standing their knees would curve back, mum was forever ‘wringing’ her ankles. She has the flattest feet ever and has awful problems as her feet have grown very deformed over the years, she has been in pain for as long as I have known (I am sure she suffers from fibromyalgia) but again she was always dismissed by doctors and just given strong painkillers (sadly she has Alzheimer’s now so I can’t discuss this with her).
I have very soft skin. When I sit it’s totally natural for me to sit with one leg completely curled around the other like a pretzel stick! Online I score 8 or 9 on the Beighton scale.
My ds (16) was also born with hip dysplasia. He regularly dislocates his knee since the age of 6. (Was told by a orthopaedic surgeon that it’s one of those things and he will grow out of it!). Dd (13) has to click every joint in her body from head to toe, every morning in order to feel ‘normal’! Is that normal?
Problem is that my GP doesn’t take me seriously, says a lot of the population are hypermobile and a bit bendy. But I have various health issues and I am becoming more convinced they are connected and maybe due to a connective tissue disorder? How do I get my GP to understand this?

Springspringhurrah · 17/10/2021 13:18

Skip that GP, trust your instincts.

EDS society very helpful

Springspringhurrah · 17/10/2021 13:30

Btw I read the manifesto/ goals document for the Hypermobility Society - it was all about educating more doctors, and then gaining validation for sufferers. Says it all really!
A lifetime of not being believed. So frustrating. I totally hear you @Thedishwasherstacker

For me diagnosis has had many benefits- a big one being my parents listening and being nicer to me ( I'm 40 🙄) I think all along they're just thought I'm a bit OTT and a whinge about being sore, being tired, bla bla, all a bit boring to listen to!

I've sent myself slightly crazy over last month or two reading every single thing I can about it- not necessarily the best strategy, tying myself up in knots about what to actually do now as to symptom management. However I also read that the tendency towards anxiety ( so unhelpful! Especially when dealing with dr's who assume you are just being anxious) is because more andrenaline than should be produced is in those with EDS.
I reckon probably my first thing needs to be stress management. Less stress = less fatigue= less pain , I hope anyway

beenrumbled · 18/10/2021 08:19

Springspringhurrah thank you for asking - no further forward - GP still looking to investigate individual symptoms without looking at the bigger picture - exacerbated by no being able to get a face to face appointment!

Still pushing though - wish we could manage to go private. DHs work insurance wont cover at this stage though we are pushing it with hem too.

That's' good you got a diagnosis!

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