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!

Ooh, read your post with interest because only a few years ago I found out (by way of physio, doc referral and specialist) I have this.

I experience everything you've mentioned too and it's a bugger isn't it? It started a few weeks into having given birth to DS1 and has never gone away. He's 5 now so I supp

What is wrong with me?? Haha.

I give up. Basically, I feel your pain and will watch with interest since not spoken to anyone with same issue (just moaned on to friends and family).

Not seen another post but I have this too. My legs are far bender than they should be and I ache most of the time. My shoulders in particular after a week at work, I bend funny at my desk without realising and then spend the weekend suffering for it! The doctor told me I was hypermobile years ago but not given it much thought other than the odd weird bend and the aches. Hoping there's no nasty long term repercussions.

The 'what's wrong with me comment' was because I actually hit send again in on another attempt in between my first and second messages. Hence getting fed up by the third attempt. But it now looks as though that didn't post do now I look rather strange.

And now I'm making it worse by explaining myself here but hey ho.

I'm sure some sensible people will come sl

Blummin nora!

I have this too and was finally diagnosed about 3 years after the birth of my second DD. The consultant explained that relaxin released during pregnancy makes joints even looser so that is often when symptoms can first appear. She said things should settle over time, but I'm no better off 2 years later!

I went for a run recently and totally knackered my back. I just seem to ache all the time. Let's moan together!

I have this. I have just been diagnosed. It explains why I can touch my toes with no problem at all, and why my arms bend back on themselves.
My knees are knackered. Some days I find stairs impossible. I've been doing physio exercises,which are helping.
I know what you mean about your joints sort of coming out of place, this happens a lot with my wrists. I have to sort of flick them around a bit until they go back into place.
I do find the whole thing quite alarming tbh, and try not to think too hard about what the future might bring.

I have this too. My shoulders and wrists are the worst and audibly crunch. I had my son six months ago and ended up in a wheelchair due to spd which was no doubt worse due to hypermobility. I also am unfortunately still suffering from pelvic pain.

I have EDS which causes hypermobility, my dh and dcs have it too.

I had trouble with jaw dislocation as a child and terrible 'growing pains'. Wasn't too bad till I had dcs and pregnancy caused me horrendous problems.
I suffer with fatigue and often hurt my neck/shoulders/back. The tiredness is the worst bit I think and I always ache.

I have EDS Hypermobilty type.so do a lot of my family including my DS.

The reason it gets worse in pregnancy is because the hormone relaxin is released,in order to loosen your joints to allow for growth and labour.
unfortunately in people who's joints are already loose,this is a big problem,for obvious reasons,and can lead to severe pain,pelvic dysfunction etc.

HMS in general should get better as you age and your joints naturally stiffen.

It sucks though,and there are a lot of extra crappy bits that go along with it,like chronic fatigue,a resistance to pain killers and anaesthetic,dental problems,heart problems,eye problems....I could go on...

I think there's a thread in general health,or maybe parents with disabilities....

Yes me too. An OT I was seeing for hand/wrist problems diagnosed me, although it's not gone any further/more formal diagnosis than that, but I might go see a physio or something when I can afford it, as I have always had loads of ankle/knee/hip etc pain as well. Also have less reaction to dental anaesthetics, IBS and bladder problems, and various other things that I read could be related.

Findus your posts did make me chuckle (not the painful bits, I promise!! ) I have a phone that is weirdly possessed so I feel your pain.. Please stay on the thread so I have someone to grumble with!

Inever yy to the weird positions, my legs are really stretchy so I sit with my legs curled up under me then when I try to stand they are in agony as they've been over-extended, and it's takes a while of gently stretching them back in the "right" direction before I can put weight on them. You think I'd learn and stop curling up on them, but I must be daft Actually, when I went to my physio for all of this I was asking him why it didn't hurt to over-extend, but hurt to put them right, he explained that over stretched was more comfortable for the joints and that was probably why I ended up in weird stretched positions.

twogoodreasons A run?? I couldn't even.. but yy I know what you mean about the after effects. Please stay and moan with me!

mockingcurl My elbows actually make me feel ill atm, I too have to do the flicky thing you said with my arms until it's back to normal, I just try not to do it in public I bloody hate stairs. For some reason, going up is mildly sore, going down is a creaky, groany pain fest. Such fun!

izzy and ariane That sounds so exhausting yy to the tiredness, especially with small kids.. I seem to get home from the nursery run and need a rest, but there are toilet trips, nappy changes, housework, I feel about 100, creaky and exhausted and just kind of stand around grumbling, flapping my arms around to get my elbows back in, with my ankle pointing the wrong way as I sat on it for too long.. It's a beautiful image isn't it

up Ah, so I can look forward to being old and stiff (though fear my leg might just snap off if I try to curl it up!) but the lists of extras is quite scary isn't it. I seem to be fine in all other ways except joints, as do other family members, the heart/eye problems in particular don't seem to affect us but there's always the worry, isn't there..

Thanks to everyone who's posted, I hope we can stick together to moan and get some support, !

Can I lurk?

I have CFS / ME, PCOS, and suspected Endo and Fibro. After speaking to a few friends with ME who have hypermobility diagnosed as well, knowing the symptoms, and knowing the link between the two illnesses, am suspecting I have it too.

It's getting worse currently, the need to click things to stop pain. My hips, hands and knees are the worst, though my spine, feet, wrists and shoulders are also problematic.

clouds Argh, wrists.. I was trying to pick up ds2 when he had a tantrum and as he struggled he pushed my wrist back with his body. I remember watching it in almost slow motion thinking, this is going to hurt soon! It went so far back! After I dropped him put him down gently, my wrist wouldn't go back for about 20 seconds. Def not dislocated but it didn't want to unbend itself - like it had no power in it. Horrible feeling, and it's still not quite right days later.

I really recommend seeing a physio, I was referred through the gp and mine was excellent. He gave me exercises for my core muscles, for my knees and taught me how to build up strength to compensate for the rubbish joints. It has helped a lot. He also referred me to a podiatrist for insoles for my flat feet (due to strange knee joint) and they've been great. I hope you can find a good physio and they can help

SirBoob x-posted but yes, please come a lurk with us! Sounds like you're going through so much

Is the clicking a sign of hypermobility? I never realised! I'm a chronic clicker, exactly as you say to stop the pain - esp fingers, ankles and elbows. It's interesting (but completely sucks) that ME and hypermobility are linked. Never bloody rains does it

Hey, I've been diagnosed with hypermobility a few months ago. I actually only found out after going for physio. My pelvic ligaments were damaged when DD was born 2.5 years ago, and have never recovered. The pain has been crippling. Physio told me the reason that happened is because I'm hypermobile, the ligaments were already too soft, add in a dose of pregnancy hormones softening them further and a large baby to stretch them out of shape and it's a recipe for damage. I was on crutches for 6 months after the birth!

Physio improved it a lot, then had an ectopic pregnancy which has set it all back again, now having physio again to sort it out.

Yes it's a bit full on!

I never knew that clicking was as sign of anything until I was out for dinner with some M.E. friends, and had to sort my hip out, then was suddenly bombarded with info and questions from them all. Have to click them or the pain is terrible.

I also had SPD during pregnancy, which was considered surprising as I was only 18, and the younger you are, the lesser the chances, apparently. So that would explain why it happened...

Me too. Things that seemed impressive when I was young (being able to switch lights off with my toes, sit/do full lotus, etc.) led to diagnosis during pregnancy.

Now DS1 is 18, and I'm struggling with arthritis. :( Oddly enough, the medical focus is on my arthritis, and no-one even seems to remember my hypermobility any more; but since my arthritis is much worse than expected for my age, I've started to remind them, and just got a physio referral.

The 'run' was a very gentle mosey around a pond to accompany a friend just starting her training for the Race For Life. It was a mistake never to be repeated!

My party trick is locking elbows that I have to flick to straighten - with a loud crack! I find wrists, ankles and shoulders like to crack regularly too!

I didn't find physio particularly helpful TBH. When I saw her I had problems with my shoulder, knees, ankle, wrist and elbows. I had to go to separate appointments to learn exercises for each joint. Each joint required 20-25 mins of exercises an unfortunately there aren't enough hours in the day!

It's good to hear from others in the same boat. Some days I somehow forget I have this and I just feel old.

Hey signing in, I have hyper mobility syndrome, if effects almost all my joints, loved it as a child as could drop into splits, sit with legs around head, freak people out with my thumbs etc. Dont love it so much as an adult as I'm getting aches and pains.
However its fairly mild compared to how some folk seem to suffer and combined with severe Tourette syndrome and ADHD its low down on the problems scales for me. Luckily I have a positive outlook, and a sick sense of humour
I take diclofenac for muscle pains when needed but they don't do a great deal. Was diagnosed hypermobile by a physio, then confirmed by an Osteo and doctor. I used to dislocate my fingers all the time as a child and can dislocate my shoulder at will waiting to find a use for that one
Oo and I click. Big time.
Wishing you all a comfortable and pain free week.

Joining the thread. I didn't discover I was hyper mobile (diagnosed) until I fell on my ankle and extended it right under me, a normal person would have torn all their ligaments, but mine just stretched out and refused to go back until I had physio.

I had horrendous spd with ds2 and their will be no more children in this family.

I have days where my knees seem to pop backwards out of their sockets and I have to sort of kick my legs back into shape. It seems that both kids have inherited the hyper mobility too.

Interesting point about metabolising anaesthetic. I recently had a filling and the dentist refused to believe the anaesthetic hadn't taken. (Tosser).

Hate the clicking thing-my left hip has been dreadful since ds2 was born in april 2012.
If I sit down for more than 5 mins it does a massive 'clunk' and is excrutiating for a split second on standing up then clicks terribly and aches. It just doesn't feel right almost as if its slightly in the wrong place all the time.

Gosh, there's a lot of us!

I'm going to attempt another post since I'm still awake. Good to see there's others out there with the same thing.

Wanted to say that, for pain (and that weird tingling sensation) in wrists and fingers, doc gave me wrist supports to use especially when lifting heavy weights (house move recently really did me in). He said that when you lift anything, your wrist is over stretched and that causes more probs. So by using the support (which has a massive metal thing in it) it stops the range of movement and lessens the impact.

I use the supports on other days too, just when I really want to give my wrists a rest. Because it's impossible to stop over stretching isn't it? It just seems normal to go about your daily life using your body in the way you always have.

Anyway - wrist supports is my recommendation. They don't do a great deal but worth a try.

Marking place. I suffer from this, I've gone from having fantastic party tricks to chronic back pain in 20 years ...
I just hope DS hasn't inherited it.