Is there a thread for adults with hypermobile joints/hypermobility?

[NishiNoUsagi]

Hello

Is there anybody else out there suffering with hypermobile joints/hypermobility? It seems to run in our family, and since my 2nd pregnancy I've been noticing it a lot more. Mainly dodgy knees, feet have flattened, wrists also bad lately. I don't know whether pregnancy has made it worse somehow, or whether it's just the physical side of looking after two kids (3 & 1 and a half) but I'm finding it quite tough. It's not bad to the point where I can't walk or function thankfully, but it's like pain/ache if I've overdone things, and knees and wrists seem to twist and stretch, pop out of place (not dislocate but kind of feel out of place, hope that makes sense!)

Is there a thread around that I can join and grumble on? I did a search but just found lots of threads about children with hypermobility (heartbreaking to read..) Thanks for any advice!

I think I may have this very mildly. Was always a bit overly bendy.
Had 'growing pains' in my legs as a child.
Had horrible SPD with the twin pregnancy, thankfully it did resolve when they were born but then came back again (triggered by ice skating) when they were about six.
I have pain in my pelvis, lower back and hips most of the time now.
Things that make it better: Pilates.
Things that make it worse: walking a lot.

HMS here too, was diagnosed in my early teens and was under Prof. Bird in Leeds until he retired. My hips and knees are knackered, at the moment my left knee is having a go so I have a support bandage and spend evenings with frozen peas on it. My hands and wrists are terrible so my grip is useless (number of pints I've tipped down myself...!). I spent high school wearing wrist splints...oh so cool me and can't walk far without my corrective insoles as my feet are wrongly angled in the arches, making my knees twist inwards. Some days I just hurt and ache all over, like a rust bike squeaking along.

Having DS I started with SPD around 14 weeks, ended up with a misaligned pelvis (I'd lost nearly two inches on one leg it was that out by he end!) and was told off for not pushing for crutches/wheelchair by the physio. I had a water birth though and, oh! It was the first time in months the pain went away, just a shame the contractions were so painful!

The pain I've got used to, what i find annoying is having to explain what HMS is to professionals, particularly the 'extra crappy stuff' as Frigg so aptly put it. I once found a dentist that knew about it, I could of hugged him for not looking at me like a loon, just a shame he was an emergency dentist in Edinburgh, not much good for regular appts!

DS has been diagnosed with hyper mobile joints and its thanks to me. I've not been officially diagnosed but through taking him to hospital appointments they recognised I am the same. I can bend my arms backwards too like many of the posters here and my fingers have always been painful.

Can I join? I crack everywhere and I'd love to ignore the pain and sheer exhaustion of an increasingly weakened body. Mind you, the cracks and crunches are ever more impressive - I can wake the cat up simply by flexing my big toe.

The other thing I'd recommend if you can afford it: acupuncture.

I have trouble with my dd pulling my fingers and dislocating them. Ds had Hm too

Ps feel rotten after mumsnetting till gone midnight for no good reason. Will I ever learn?

HMS and HEDS are the same thing according to NHS national diagnostic clinic for EDS.

Another one reporting for duty. I was diagnosed after years of pain, I had a malalignment in my hip that sensitised my nervous system which triggered the diagnosis. I was on pregabalin for almost 2 years to treat the pain & have a very specific Physio/Pilates regime to strengthen my core (have the HMS particularly badly in lower back and hips, along w shoulders wrists and elbows). Avoided spd during pregnancy as i knew what i needed to do & luckily carried small - also had an early c section to prevent further damage from labour. I still exercise a lot - aqua aerobics, ballet (was a prof ballet dancer in my youth) Pilates and cross trainer & occasionally bike - but nothing with impact.

Some tips:

• prof Grahame at Ucl is the current guru accessible on NHS. There is also a pain clinic there which is very good. I am see by dr John outhwaite who only works privately now, he is also v v good.

-go onto the forums for HMS - called the hyper mobility association. Some very good tips & support there.

• PILATES. Pilates Pilates Pilates. BUT, if you can at all, try to get some 121 classes first because you will cheat otherwise. At the very least, try to find a group class with a teacher that understands HMS, as you need someone to stop you from moving your joints rather than engaging your muscles.
• in a similar vein, stop yoga. It is end of range movement and us "bendies" do not need it. Ditto stretching - our muscles are flexible enough!
• watch yourself in a mirror when exercising - we have generally poor proprioception so need external checks on where our bodies are
• you MUST rest (easier said than done). Hyper mobile people do not recover from muscle fatigue the same way as normal people do - because our muscles are always working overtime to support our floppy joints. There is a technique called pacing you can read up about online - you must do this, it is a false economy to try anything else.

Good luck! It is a crappy thing to have at times but as dr outhwaite likes to remind me "HMS is a superior trait to have" ;)

Great, usable advice angeltulips. Thank you.

Checking in.

Bendy child now knackered adult. Clicky achy joints (partic knee, jaw and shoulder). And completeky knackered back (SA joints).

Ouch.

bloody hell! I think I have this! Just been to docs and will be having a blood test in a couple if weeks to rule out other stuff. Never heard of hms before. I'm in daily pain and get muscle and joints pains, spasms and cramps, shooting nerve pain, tingling, clicky joints and bruise really easily. My knees, elbows and shoulders crunch and I can bend my wrists flat against my forearm. It's got so much worse since ds2 was born, I had pgp in pregnancy.

May I join, please? My adult daughter is hyper mobile and has many of the difficulties described here - I'd like to learn more to help support her. Thanks.

I have this too. always had knees that bend the wrong way and very flexible. then had 2 DC and it got worse and now I have achey legs most days, and had a separated pubic bone in both pregnancies my knees click going up and down stairs. I have to be careful exercising - no shred for me! yay

I was diagnosed with this when young and living in Sweden. Whenever I see the gp here though I just get told to diet =(.
I have flat feet that always hurt, my knees are always knocked back and hurt as well and in the last few years I've started having issues with my hips and wrists as well. Lots of clicking and aches and pains. It's proving a nightmare to get any help though investing in orthopedic shoes have helped a lot with the day to day pain as I spend a lot of time on my feet.

Sorry for ignorance, but what are, SPD, HEDS etc?

Can I just check some abbreviations, please...?
SPD
HEDS and EDS
Thanks!

HEDS Hypermobility type Ehlers Danlos Syndrome.

Checking in, all very interesting my legs and hands are terrible. I didn't realise that horrible fatigue went hand in hand with this condition, I am always exhausted and just put it down to having young children. Also I had to be given way more anaesthetic than expected when having my wisdom tooth out last year, again like others the dentist didn't believe me when I said I was in pain. Ditto when I had appendicitis and had twice as much morphine than they expected me to need.

SPD= symphis pubis disorder

I was told years ago(was a teen) by an osteo I was hyper mobile ( had back problems at that point from horse riding).

I have weak knees after a fall 8 years ago( just pulled something but they don't get fully better)

My wrists are sore from an injury about 10 years ago at work ( child pulled my hands)

In my 3rd pregnancy I had bad SPD ( 12 weeks on crutches then 6 weeks after) which took 18 months to walk without pain but was weak.
Then I got pg again. Been on crutches for 8 months now and no sign of getting rid soon although I can walk around the house now.had a wheelchair for last month of pregnancy. The crutches seem to be taking their toll on my arms & shoulders now.
Main pain now seems to be hips rather than symphis pubis unless I totally over do it.

Physios focus on the individual bits and I'd quite like someone to give me a complete overhaul but the referral to orthapaedics came up with a suspected hole in my hip but nothing they could decide on. This was before I pg#4 and everything gave out properly!

I am also developing lots of minor allergies which aren't helping my frustrations.

Sorry I also forgot to mention - ORTHOTICS. I fought getting these for ages (too vain!) but my goodness they have made a difference. I save the heels for special occasions now :)

To the poster who said they needed a complete overhaul - you must find a doctor who knows about HMS. And I would really recommend pain killers - the first thing my dr said when I was diagnosed was that "we are going to aggressively treat this pain" - I almost cried with relief. Your nervous system will be playing up so you need to deal with it all slowly.

Have any of you lot suffered prolapses?

I haven't got many loose joints, only my finger joints and my wrists are dodgy, but half my insides are hanging down where they shouldn't and I suspect it's related.

Waiting to see a doctor and hoping they will operate, can't really live like this.

I wonder is it possible that my "chucking stuff" as dh calls it is rrelated. Sometimes my grip seems to just go and I end up dropping what I'm holding. I've had electro nerve tests, but no confirmed diagnosis.

Yay to clicking. I'm always clicking my joints, particularly my hands and shoulders

Hi ladies, I'm an OT and saw many people with joint hypermobility when working in rheumatology.

I would second much of the advice already given:

Wrist braces can help support weak wrist joints - they can be bought privately if you can't get a referral to an OT who can assess your hand and wrist function.

Pace your activities. Don't do too much in one go, break tasks down into managable chunks and rest regularly.

Gentle exercise - as mentioned above, Pilates is excellent.

Orthotics for footwear - these can make a massive difference to metatarsal pain (ball of the foot), ankles, knees and spine.

Lastly, try to get a referral to a rheumatologist if possible. It's one of these conditions that seems to come under a few specialisms, but hopefully you'll get to see specialist nurses, physios and OTs if you can.

I have this too, I feel like my legs and hands aren't attached properly. I have weak hips and wrists and I'm very clicky.

My DD is 4 and suffers a lot with it. She has an overextension in every joint and low muscle tone. She struggles to walk and can't manage stairs easily. She falls constantly and has been in a&e 4 times in 2 years just from falls yet everyone is refusing to do anything for her. No physio, no orthotics, no OT, nothing. They've said they might review it if school think there's a problem.
Yet my DS is 5 and also slightly hypermobile. He's been seen by orthotics and physio and fitted for insoles. That maybe because school referred him and not me so once DD starts school hopefully the SENCO will help.

All 4 of my DC are very bendy though and DD2 is almost 7 months and showing a lot of similar signs to DD1. Poor head control, not rolling yet, no signs of sitting etc.

It's a bit crap yet people just think its cool to be flexible.