Hypermobility - when did you know

[Smartiepants79]

If you or your child are hyper mobile can you tell me when it was diagnosed? What age and what symptoms. Thanks

DD (8) had a tiny fracture, which she'd been struggling pain wise for weeks and eventually the fracture clinic spotted it, he then checked her joints and I think she got a 7 or an 8 on the Brighton scale.

I realised when I was 32 and pregnant. My hips have always been slippy but were notably more painful in pregnancy. I gave hypermobility in many joints. Generally it doesn’t affect me too much but I can’t carry plates easily and my tennis backhand sucks!

My daughter also has it, her ankle collapses easily, she has poor coordination and she struggles with using her hands in some ways - pressing buttons, exerting pressure with a knife.

Thanks all. This is weirdly reassuring. My DD is 13 and been exhibiting signs that could be associated with hypermobility but it’s only really become something that we’ve noticed in the last couple of years. Clicky joints and weird pains in places.
I’ve been scaring myself it’s some kind of awful disease. Hypermobility seems to really fit the bill but I thought this might be something that we’d have known ages ago. It’s interesting to know that it can go unnoticed for some time.

Classed as 'double jointed' whenni was a kid. Only in adulthood realised what utterly actually is. Wrists, knees and ankles are always so sore.

Both of my boys were diagnosed when they were around 15. Both had dislocations by not doing much.

My youngest who is now 16 has had five dislocations since May. Three shoulder dislocations and two knee.

He also has ADHD and bizarrely there is a link!

From when DC first walked as one foot turned in and always W sat. Briefly saw physio but it hasn’t caused major issues into teens

Oh, and sadly he's been told to no longer do any sports until he stops growing!

Picked up by health visitor at 7 month check (thumbs still tucked into palms, low tone, not sitting up) referred to occupational therapist who suspected EDS. EDS confirmed at around 7 years old. She is quite severe mind.

DD1 at about 7 due to her pronating feet, but was obviously incredibly bendy anyway. Dislocations came later.
DD2 at 2... by then she'd dislocated her elbow 3 times. She's had the worst number of dislocations (once did her shoulder jsut rolling in her sleep) She could also still do the splits at 30 weeks pregnant!!!!
DS2 a few weeks old.. he was also completely floppy (congenital hypotonia)
Walked very late, wore Piedro boots, the AFOS (splints) til adulthood and was a wheelchair user until his teens. (also has autism)

The girls have a fair amount of pain and dislocations, also gut issues. DS2 doesn't have much awareness of pain so we don't know about that, and he also has Ulcerative Colitis so his guts are shot anyway.

Two of the three are very tall and lanky with a Marfans like body shape and long arms. They have EDS. DS2 was thought to have EDS type 4 but was never tested as tbh his autism was impacting him more than his physical stuff and now as an adult he has stiffened up considerably while the girls are both still very hypermoile.

Dd at about 25 when many other issues began to come together

I had seen various physios for SPD during and following my second pregnancy. They all said "you're very flexible" after asking me to bend and touch my toes. I was surprised and assumed this was a good thing.

It was only after seeing another physio after a minor car crash about 5 years ago that she explained it wasn't a good thing and gave it a name. I saw a rheumatologist after for a different reason and she confirmed it.

I've never been double jointed though. My main symptom is just pain all over if I've spent the day on my feet or exploring (on holiday or days out). I also bruise like a peach, and am clumsy af.

46 despite having first seen a rheumatologist in my late teens. I kept being told it was all in my head and there's no way that it hurt when staightening my arm. Throwing a ball as a kid was painful but again I was told I was making it up.

Ironically I'm early 50's now and my GP has just suggested adhd too.

I was sent to a specialist physio who explained a lot but it stopped due to covid starting

I was lucky/unlucky. I went to physio at four due to walking difficulties. I got dx at ten because a)Dad was a doctor and knew where to go and b) Dad had had an operation to tie (yes you read that properly) his shoulders to keep them in place. I should point out I’m 65 and were my Dad still here he’d be 91.

@CupOfCoffeeandaPineappleChunk.. My 7 daughter is extremely hyper. How did you protect yourself please. Did you have specialist. We've seen no one

I was diagnosed at the time as having joint hypermobility syndrome which had now been reclassified as ehlers danlos type 3. My son was also diagnosed with it. A rheumatologist or paediatric rheumatologist will diagnose. They tend to send you to physio. Mine was so severe, with dislocating hips, shoukders, knees, ankles, fingers etc (all without actually doing anything out of the ordinary) I was sent to a specialist Extended scope physio who was very different and only treated this. It helped a bit- not enormously.
Fast forward a few years a few years, I now do pilates, I've done much trial and error and have learnt how to differentiate between good and bad teachers and do sessions in this and work on my own As I have a lot of experience. I have also found a superb osteopath who is a specialist in dealing with the condition (many actuality make it much much worse by loosening Lac joint even more), so I've learnt to and and support my joints. There are a lot of seemingly inocuous things- typical school pe type activitesfior example, that I just can't do. I know not to even try. Learning this had been a revelation. So it's a combination of finding what not to do, minimising damage and treating it quickly if it goes wrong and maintaining a good condition generally.

What are your main areas of concern, which joints and which toes of injures? Generally king small resistance exercises with a band that promote stability are really good, things that involve a lot of jumping about, stretching and far movement can be problematic.

DD was diagnosed as hypermobile at 14 and then with hEDS at 19.

Initially her fingers and toes started disclocating and sublaxing a lot, on examination all her joints are severe. There's a photo of her when she's about 8 with her arm stretched out at quite the angle and she always says how did you not know but she was very very slim and it was just assumed her joints sat funny due to that as no doctor ever said anything!

I've always been 'flexible' but wasn't until I seen a rheumatologist at 35 they i was diagnosed. I thought everyone could flex the same lol

Always been a klutz. Did the thumb to the wrist party trick. (Can’t now - arthritis.) Joints like maracas… Overly-familiar with orthopaedic surgeons for all my life. “Growing pains” all the damn time. What clinched it was dislocating my thumbs while doing CPR on a dummy. The hand surgeon diagnosed me while asking about my medical history. He also sent me off for eye and heart scans and it’s a good thing he did. I’m now in the heart transplant list.

Late teens.

I have always had the ability to manipulate my joints into odd positions. Can bend my thumbs back to my wrist, touch the floor with both palms flat, the dislocations and joint subluxations, my hip/knees/fingers/toes pop out at random,velvety skin that is insanely stretchy, bruising really easily.. plus a whole host of other symptoms. I am also stupidly clumsy, will fall over fresh air/walk in to the corner of walls, slip down the stairs on such a regular basis that my family don't even check on me when I do now

I was constantly going to the GP and being put on so many painkillers, but thankfully once got a locum that picked it up and referred me to the right specialists. I was diagnosed with hEDS.

DD was diagnosed last year at 21. After ACL snapped. Saw specialist and did all the manipulative stuff and told us. Waiting for surgery. Long wait😡

Myself and my son have hypermobility. He was diagnosed at 5 due to toe walking and couldn't hold a pencil in reception properly. I've never been formally diagnosed but his rheumatologist diagnosed me. I had really bad SPD in all my pregnancies which I think must be related.

I'm 50 now and really suffering with pain in my elbows and shoulders. I have to sleep with my arms propped on pillows at night so I don't over extend them I my sleep. What other joint care do people do?

Known since birth of DD but wasn;t officially diagnosed until she was 4.

I was told by a podiatrist when I was in my 40’s. I thought being able to out my hands flat on the floor if asked to touch my toes was normal but apparently it was not.

I was reading recently there is a link between anxiety and this condition.
I am double jointed in my elbows, and l have also suffered anxiety attacks.
I do get a bit of stiffness and aching in the joints in my arms now l am 55.

Told I was hypermobile by a doctor at 10 when my shoulder kept dislocating and getting stuck. Often things get worse around the onset of puberty and then sort themselves out in late teens/20s.
It had been obvious from when I was a toddler, with the flexibility and the gait etc. All of my mums family is hypermobile so its normal for us.
It was more suprising when my brother came out nonbendy. My mum said it was annoying as she has to relearn how to dress a toddler who doesn't move like all her others, she said it was really hard to get him in coats and in and out of swings and highchairs.