DD ‘clicking’ herself all the time - this isn’t normal is it?

[RedPandaWanda]

My dd is 13.
From the start of the day and throughout she is always clicking her joints. She says that unless she frees herself this way she is in pain/discomfort until she ‘clicks’. She will click her neck both ways, her upper and lower back, hands, feet, ankles, knees etc. She twists and turns until she get relief. You can hear a loud resounding click when she does it.
I have often wondered if joint hyper mobility (maybe even EDS) runs throughout my family as I have many issues as does my dm and grandad had problems too, my ds often has dislocation of his knee but no gp or even a paediatrician took it seriously.
Does anyone else have dc who have to click all their joints? Is this a normal thing? I have no idea!

@scoobydoo1971

I do this now, unintentionally. I did this a lot as a kid. My son does it too, and you can hear his knees clicking rooms away. The noise is escaping air, usually. We have Ehlers Danlos syndrome. I can only suggest finding the Beighton test online. It is only one part of a diagnosis, but a good starting point. If it is Ehlers Danlos syndrome, it is very important to be under specialist rheumatologist care. I wasn't diagnosed until 45, and I have some very bad ligament and bone damage, as well as vascular issues, that have developed into a very serious situation as a result of late diagnosis. I've had four surgeries this year alone and the doctors are trying to persuade me to have toes amputated that have twisted and become necrotic from lack of care over the years. I took my son to a paediatric rheumatologist privately as it proved hard to find the right person in the NHS.

I’ve had issues most of my life, tried the Beighton score myself and get an 8, gp just not interested. I wonder if it’s worth paying privately to see a rheumatologist?

If you score 8 then you surely have EDS? Dd scored 8 when I tested her at home, I took her down the GP and said I wanted her seen by a rheumatologist. Gp pulled a bit of a face but he did refer her and she got a proper diagnosis . Which has been helpful for her at uni. She was also then referred to cardiology for cardiac tests which the consultant said was important.

Someone I know also has eds and all her kids do. It does run in families

@scoobydoo1971

I do this now, unintentionally. I did this a lot as a kid. My son does it too, and you can hear his knees clicking rooms away. The noise is escaping air, usually. We have Ehlers Danlos syndrome. I can only suggest finding the Beighton test online. It is only one part of a diagnosis, but a good starting point. If it is Ehlers Danlos syndrome, it is very important to be under specialist rheumatologist care. I wasn't diagnosed until 45, and I have some very bad ligament and bone damage, as well as vascular issues, that have developed into a very serious situation as a result of late diagnosis. I've had four surgeries this year alone and the doctors are trying to persuade me to have toes amputated that have twisted and become necrotic from lack of care over the years. I took my son to a paediatric rheumatologist privately as it proved hard to find the right person in the NHS.

My daughter was born with twisted toes.

I am very very hyper mobile and have to click my finger, ankle and wrist joints frequently or my joints don't feel right. My elbows often lock in position and have to be clicked or I can't straighten them, which is really painful, but generally I just feel stiff if I don't click. I saw a rheumatologist but I don't know what they checked for.

CovidCorvid it’s so hard to get anyone to take it seriously, I have digestive iand gynae issues which I’ve read can be common in EDS and it looks like dd is the same. My gastroenterologist says there is a connection then never mentioned it again. Does your dd have any other issues?

@RedPandaWanda

CovidCorvid it’s so hard to get anyone to take it seriously, I have digestive iand gynae issues which I’ve read can be common in EDS and it looks like dd is the same. My gastroenterologist says there is a connection then never mentioned it again. Does your dd have any other issues?

Yes. She does have coeliac disease but has been gluten free for years (confirmed by blood tests) and has ongoing gastro issues. So at least now we know it’s likely to be due to EDS.

She has terribly heavy periods which she had to tell the GP could be connected to EDS (he didn’t know) and due to her EDs diagnosis the GP has agreed to prescribe tranxaemic acid. Rather than fob her off as usual.

I’d go back and clearly and calmly say you want a referral. If they refuse ask why are they refusing.

CovidCorvid sounds very similar to me, although no coeliac test according to a recent biopsy but still ongoing gut issues. I will definitely have to ask the gp to look into this further and will get dd looked at too.

It definitely sounds like it is well worth further exploring the EDS (and related disorders) diagnosis. A good friend was always 'clicky' when younger with beautiful porcelain-like but stretchy skin. She was diagnosed in her 30's, and in the meantime had various symptoms including bowel problems and nearly died giving birth to first child which was not realised as connected to the EDS. Had to have a hip replacement at 40 as the connective tissue was gone, and now one of her children is diagnosed with it too.

She's become a bit of an activist and advocate about it and tells me it's under or mis -diagnosed with few specialists in the field and GP's reluctant to refer for testing or take it seriously. She's had to fight a lot for herself and now her children.

I clicked all the time at that age and we thought it was just growing. Have now been diagnosed with EDS as an adult. Worth being cautious and exploring to avoid long term damage to anything.

I did it. My mother would yell at me, you’ll give your self arthritis! As it happens I have RA. But have been told years ago it’s just releasing build up in joints. They’d get stuff if I didn’t do it. One of mine does it and H has started to recently. It is an awful sound I admit

Could you see a different GP at your same practice? The Beighton scale is only out of 9 and you scored 8/9!!! What does your daughter score? I'd being seeing a different GP ASAP or a specialist if you can afford it.

I have hypermobility and I have to do this often if joints get stuck. What kind of exercise does she do regularly? She needs to be strengthening her muscles to stop her joints from moving around.

You might want to Google tics, tik tok and teenage girls....there's a huge spike in such tendencies in this age group being attributed to social media.

My 14-year-old does this and I've wondered if he's a bit hypermobile. He has to have a good stretch and click in the mornings before he can get out of bed and his toes (which are absurdly long) often click when he's walking barefoot as well. I saw a rheumatologist a few years ago about something else and she commented that I was 'very bendy' and did a quick hypermobility test - it didn't show up that I was clinically hypermobile but I wasn't a million miles off, so maybe he's inherited my bendiness. He's very tall and gangly and describes himself as a noodle. The clicking does go through me a bit, especially when he walks down the landing at night with all his toes going! It's reassuring to know that others have similarly clicky teens though. I'll take a look at the Beighton test for him.

@Yummypumpkin

You might want to Google tics, tik tok and teenage girls....there's a huge spike in such tendencies in this age group being attributed to social media.

I’m confused, I didn’t see anything about tics? She’s clicking because of joint discomfort which is not a tic.

My 17 DD year old does this. And now she’s got a boyfriend and he does it too! God the pair of them lolling about clicking drives me mad.

All 3 of my dc but especially dd do it all the time. Hate it!

I do it all the time. Unintentionally too when I walk up the stairs etc.

My fingers feel uncomfortable if I don’t do it.

@spiderlight

My 14-year-old does this and I've wondered if he's a bit hypermobile. He has to have a good stretch and click in the mornings before he can get out of bed and his toes (which are absurdly long) often click when he's walking barefoot as well. I saw a rheumatologist a few years ago about something else and she commented that I was 'very bendy' and did a quick hypermobility test - it didn't show up that I was clinically hypermobile but I wasn't a million miles off, so maybe he's inherited my bendiness. He's very tall and gangly and describes himself as a noodle. The clicking does go through me a bit, especially when he walks down the landing at night with all his toes going! It's reassuring to know that others have similarly clicky teens though. I'll take a look at the Beighton test for him.

I always click when barefoot. I can dance on a hard floor and it sounds like firecrackers. Drives DH mad. So obviously I do it on purpose, as much as possible

I used to do this and genuinely felt weird if I didn't do it, I'd click my fingers my neck and my ankles!! I don't do it anymore just sort of grew out of it 🤷‍♀️

My step daughter does this - all the time.

No reason for it, think it's a habit. It really is all the time and the noise goes straight through me and it makes me cringe!!!

I have never mentioned how much I can't stand it to her in fear she'll only do it more and more 🙄

I can't click on demand, maybe some people are just clicky..

I've always done it. I do think it less now than when I was younger. I like how it feels. Not done me any harm.

Though I've just done the Brighton test and scored 6. So turns out I'm hypermobile! I never knew.

My autistic (Asperger's) son does this: once he does one finger he has to do all 10. It's definitely a kind of tic for him and related to the need for deep sensory feedback.

I’m like this too, particularly with one of my knees. I went to the doctor about it when I was about 14 and they said it was normal and not to worry. I’m hyper mobile in some joints (elbows, wrists, fingers, knees) but not diagnosed with hypermobility or EDS.