Do you have bad posture? Do you sit funny on chairs.

[ofwarren]

I'm 42 and the years of slouching and sitting weirdly are really catching up with me.
When sitting on an armchair or sofa I lean to the left, I have my feet folded up the side and on the seat and I tuck my hands down hard so my fingers touch my wrist.
I can sit in this position for hours.
It's like the sitting version of the foetal position.

I suffer with neck pain, wrist pain and a bulging disc because of this, yet I cannot stop. I just can't get comfortable sat any other way. It feels wrong and 'cold' for some reason.

Anyone else?

[Nortd]

I'm hypermobile as well, bendy, clicky and just a bit broken, terrible posture. My neck and back always hurts and my shoulders are so curved in.
I sit with my legs folded up on either side of my bum beside it not underneath, having them dangle off a chair makes me feel a bit ill, I think it's a sensory thing, as it's always been that way, I'd get told off at school and made to sit right.

[BlackeyedSusan]

Hypermobility is on a scale. At the lower end you are mainly just a bit bendy. There is Hypermobility Syndrome Disorder and Hypermobile EDS which some academics think are the same thing, slightly different intensity.

There are other types of EDS which are rarer than the hypermobile type and can be more dangerous.

I didn't know I was bendy as to me my body was normal. And it stiffens with age.

[Justilou1]

Ingesting collagen is a waste of time and money for EDS. Your body processes collagen supplements as “protein” anyway. No supplement is going to fix your DNA. What helps is mitigating risk, gentle movement (yoga is considered to be a bit risky due to potential to over-stretch), splinting or resting affected areas, appropriate pain relief - pain killers, heat pads, ice, etc…

[RainbowZebraWarrior]

I tried supplementing with collagen for a few months. Just in case it helped with my skin and nails (nails are paper thin) it didn't work, so I didn't perservere. I think if the collagen is actually faulty, then I'm not sure how anything would fix that. Might ask Rheumy for a medical explanation. It certainly never been mentioned on any of my EDS Support groups.

[ofwarren]

If EDS is a collagen issue, does supplementing with collagen help or does it not work like that?

[BarrowInFurnessRailwayStation]

I sit with my legs tucked together at the side.

I've got some hypermobility, low muscle tone and dodgy joints. I control my pain with a high dose vitamin D. I'm probably dyspraxic and fall over quite a bit. I won't engage with the medical professionals and just manage things myself.

Ds2 is more hypermobile than me and is very bendy and clicky.

[RainbowZebraWarrior]

EDS UK Helpline number is 0800 9078518

[RainbowZebraWarrior]

My private Rheumatologist did not diagnose my EDS as my skin wasn't stretchy enough (completely ignored the 17 other boxes I ticked)

I was diagnosed 15 months later by an NHS Rheumatologist

If anyone here is interested in pursuing a diagnosis, EDS UK Helpline can assist. You just let them know your area and they will give you names of EDS Aware professionals near you. Saves a lot of arsing about with people who don't understand the condition.

[Justilou1]

Tbh, from what I gather (not in UK, but am friends with a lot of UK nurses and HCWs) a lot of private specialists are still not seeing patients anyway, and some are still being reconnoitered to COVID Wards. I am not sure it would be faster.

[ofwarren]

I will try
Luckily (sort of) my middle child has been having seizures and cos it caused his lips to go blue he had a heart scan which was normal.
My youngest have never had a test though.
My eldest is diagnosed aspergers and dyspraxia and he is clickier than me and really struggles every morning being sick with acid reflux.
I think we all need a good looking over to be fair.
I really wish we had private health care.

[Justilou1]

Hi @ofwarren, I’m back again to suggest you go and discuss your symptoms with your GP. Because EDS has a vast spectrum of symptoms, each requiring different medical specialties, and with varying levels of health risks, it would be worthwhile “requesting” (demanding) a referral to a rheumatologist. I’m 50 this year, and was diagnosed about two years ago when my thumb dislocated and I barely noticed. The hand surgeon asked about my orthopaedic history (vast… have had many surgeries) and did scans of my hands and shoulders, etc… I assumed I had the h-EDS variety, but my GP insisted I have some heart scans, etc… I have the cardiovascular version and I need an aortic valve replacement in the next couple of years. (My kids have been scanned and their hearts are fine, thank goodness!) If you have kids, it is very likely that they will inherit this condition. (All of mine have wonky joints and other symptoms…)

[ofwarren]

@amusedbush I've been known to do the knickers thing in bed. Your hand just flops around with nowhere to go otherwise.

[amusedbush]

I'm autistic with ADHD and dyspraxia, and I've always put my crappy muscle tone down to the latter but recently I've been questioning hypermobility, especially in my wrists and ankles. I'm currently sitting cross-legged, wedged into the corner of the sofa with my back against the arm rest, wrapped tightly in a blanket. I'm forever tilting to one side, bunching my shoulders up and pressing the bottom of my skull against the top of my back (if you can can picture that!), and folding myself into a pretzel. Even when I lie on my side in bed, I fold my legs up into a triangle to prop me up. I bought a massive office chair so that I can sit cross-legged on it. I have a V-shaped pillow for sleeping so it supports my front and back when I'm on my side, then I bend one knee up to my chest and I tuck my loose hand into the waistband of my knickers

[HerRoyalHappiness]

It really is. Growing pains is such a brush off. It pisses me off no end.

[RainbowZebraWarrior]

@HerRoyalHappiness 👋

Think I mentioned on our pain thread that I've finally managed to get 10 yr old DD referred to a specialist Geneticist. I have had to be a massive pain in the arse to get this far, however.

Fucking 'Growing Pains' really pisses me off. I was told that in 1977! Awareness really should be better now. As you'll see from uothread, I'm a fan of my hand outs. They get stuck in front of every Healthcare professional I see. I even completed the EDS Diagnostic Checklist for DD. It's what finally made them sit up and listen at her appt last week.

It's a good job researching info is a ND specialist area, eh? 😆

[HerRoyalHappiness]

That went on for around 40 years for me..

I was 27 when I was diagnosed with EDS. But I'd had to do my own research before hand and had been trying to get a diagnosis for years and years. I still feel incredibly lucky to have been diagnosed so young.
DD has a lot of the same symptoms I did as a child, click joints, very flexible, constantly complaining of pain. Yet trying to get her diagnosed is proving harder than it was for me. They just seem to brush off my concerns as growing pains

[RainbowZebraWarrior]

This is possibly my favourite hand out. I gave one to family members when I was first diagnosed. Some shocking stats around length of time for diagnosis. Not surprisingly though as most heath care professionals don't join the dots.

Before diagnosis, I was told

"Too young for that"
"Too old"
"You can't possibly have that many things wrong with you"
"I don't think you have EDS, it's too rare"

That went on for around 40 years for me..

[Svara]

I'm autistic and like my weighted blanket, both on the sofa and in bed, hate having to take it off in the summer, cold room with the more covers the better. I'm not hypermobile nor have low tone.

DS is NT though he scored in the twenties on the AQ test when he was younger, where the NT and Autistic curves cross. He is hypermobile, can click almost everything, prefers to sit cross-legged with support or in his beanbag.

[RainbowZebraWarrior]

@Spudlet

You could try sports massage to ease the discomfort, but make sure you choose someone fully qualified and insured, and have a really good chat with them about your issues pre-appointment. Definitely tell them you suspect hyper-mobility as some techniques will not be appropriate for you. And also talk to them about your pain threshold, get a sense of how they will deal with that - a good therapist will be able to modify their practice to your needs. Don’t accept any ‘no pain no gain’ malarkey.

Can fully endorse the no pain, no gain malarkey. Was a massive bug bear of mine in the industry.

(Higher Level Sports Massage Therapist) Retired at 48 yrs old due to EDS affecting me way too much. Spent far too long fixing others at the detriment of myself.

[Spudlet]

You could try sports massage to ease the discomfort, but make sure you choose someone fully qualified and insured, and have a really good chat with them about your issues pre-appointment. Definitely tell them you suspect hyper-mobility as some techniques will not be appropriate for you. And also talk to them about your pain threshold, get a sense of how they will deal with that - a good therapist will be able to modify their practice to your needs. Don’t accept any ‘no pain no gain’ malarkey.

[BoardLikeAMirror]

I have very 'floppy' wrists and fingers, I can touch my forearm with my thumb, for example; I can also bend double very easily. I've always just thought I was flexible, I didn't realise it could be a sign of other things

[BoardLikeAMirror]

That list - I tick so many of those! What I've always thought of as 'weak ankles' that sprain at the drop of a hat; IBS, 'sensitive' bladder (I cannot relax properly unless it's completely empty); always got unexplained bruises and I've got so many stretch-marks - I've never had children, they just appear at the slightest fluctuation of my weight and have done ever since I went through the normal bodily changes at puberty and they appeared on my 'new' breasts, hips etc. I've also had a full elbow dislocation in the past.

[RainbowZebraWarrior]

@ofwarren I had endoscopy a few years ago. 4 cm sliding hiatus hernia. Check!

[RainbowZebraWarrior]

Not everyone has all hypermobile joints (I do, so score full marks on the Beighton scale) and I think this is why hEDS is sometimes ruled out. Of course there's also classical EDS and other types too.

[ofwarren]

[quote RainbowZebraWarrior]@ofwarren I've shared this before on these boards as I think it's very helpful. Hernias and Prolapses are also common with hEDS.[/quote]
Fascinating!
I'm being checked for a sliding hiatal hernia at the moment.