AIBU to think sudden joint pain and clicking during puberty isn’t normal?

[DelilahEATS]

I have an older son and this didn’t happen so am very worried
6 months of 12 year old DS complaining of joints being sore / locking out of place
Starting with ankles followed by wrists and lately the back

Constant clicking noises which are unbearable to listen to as he manipulates the joints back into place

GP unconcerned but blood tests and MRI showed nothing

Have a look at Ehlers Danlos and PoTS, OP.

The International Gene Clinic in London is private, but a good start for assessment if you can access it.

Pots is postural orthostatic tachycardia syndrome. When your blood pressure drops and often pulse rises when you stand up. Goes hand in hand with EDS. Dd has both, presented mid teens. Diagnosed at 19yo. Google beighton test if you want to see about eds scoring.

He really needs to be seen by a rheumatologist.

I asked the GP to refer to a rheumatologist and she said no need as bloods clear?
What would they look for aside from arthritis?
GP said definitely not there as no swelling or redness

Hypermobile EDS does not have a genetic test.

For the OP, joint clicking and cracking while awful sounding is not damaging his joints.

It’s the pain he’s in that’s the issue
it’s taken over an hour for him to click his ankles and wrists into place enough to get comfortable before going to sleep

It just seems astonishing to have never had a problem until now

I will find the money to go private if I know what I’m doing but so far I’ve spent over £1000 and am literally no further forward

The NHS aren’t great with hEDS. Run through the Beighton test with him. Is there a family history of hyper mobility? If you’re looking for private diagnosis then we had our daughter diagnosed through www.thelondonhypermobilityunit.co.uk. They do virtual appointments if you’re not London based.

Get him swimming to gently excersise and build up the muscle to support the joints while you push for further intervention. Once muscles have started to build and pain eases, slow squats will help for the hips, knees and ankles. Is there any swelling?

No family history and not one sign of this until earlier this year
It came on so suddenly and has just got worse
He does swimming twice a week - we had to stop karate as he was in too much pain during and after each session

I just want to know what’s going on so I can help him

Ill look into that clinic thanks

All I know is everything I ever had/have involving joints and skeletal structure that was written off as "growing pains" as a child, as "osteo" as an adult (it was neither) was ultimately diagnosed and treated by a rheumatologist. If your GP won't refer, then you will need to go a private pathway, I expect.

Sorry, didn't answer your other questions. There are I think over 500 forms of arthritis, for starters. Redness and swelling are not involved in many forms. I think it is inadvisable (though natural) to make your own diagnosis of whatever.

Maybe I got that figure wrong! Over 100 seems to be it.

Thank you -
I will try and find a rheumatologist who can see him then

I feel I’m just guessing the whole time and nobody is listening no matter how many GPs / physio / podiatrists I’ve seen

Yes, it's awful when you're just going round in circles, not being taken seriously, or getting misdiagnoses and pursuing unhelpful treatments. I hope you get some answers for your son.

@ApiratesaysYarrr

I know. I'm 6 years in with daughter.

The Gene clinic is it's name, they offer a whole host of services.

I took dd to the gp. I clearly stated that I think she has Eds, listed some bullet point symptoms and said she scores x on the beighton test and I’d like you to refer her to a rheumatologist.

I think you need to be a bit pushy and very clear.

My DD has this and it started when she was really small she would complain of leg fatigue and has been told for 16 years it’s ‘growing pains’
she’s 18 now and sometimes cries about it but we get absolutely nowhere with any GP about it ever!

gptoolkit.ehlers-danlos.org/

I’m struggling to find a rheumatologist anywhere near us

What will they do aside from bloods?

No one else seems to have mentioned it yet, but I'm interested that you've got ADHD in the mix - probably 80% of the adults and children I know in my local adhd/asd support group have other comorbidities, particularly hypermobility, dyspraxia, PoTs. I think you need to push much harder with the gp. A private occupational therapist much be another route to explore in that regard.

I agree rheumatology if you can get a referral. I'd been having pain for years and had been turned away by one GP but when my new GP referred me to rheumatologist it all just slotted into place and they were fantastic.

I'm surprised the physio didnt recommend rheumatologist.

A rheumatologist can diagnose EDS, JHS etc.

Go back to GP. If he's an active young lad and pain is affecting his quality of life (eg giving up karate) then he needs to be seen.

I also think he needs to learn more about sublaxations and tendons/ligaments clicking. When you dont understand what the body is doing it's easy to think it's out of place and needs to be "settled" back into the right place. Maybe some mindfulness and a nice heated blanket.

Bob and Brad on youtube are excellent explainers of physiotherapy and they have a number of videos on hypermobility that might be useful.

It's growth op. It feels like joints coming out when tendons slide over knobbly bits of bone. It's not damaging. His muscles are tight because the bones grow quicker than muscles. Lots of stretches and it will improve

Thank you,
Im going to call the GP again now as rheumatology hasn’t been mentioned at all by anyone but this morning both wrists have constantly been locked into position where he has had to click them back into place

The ligament issue mentioned was exactly why I had an MRI done as the sonographer who did the ultrasound suggested this but no abnormalities found on either

Physwizz, nobody has said this to me the entire time.

im struggling because nobody is really saying anything - we’ve been waiting for a paed appt at the hospital since March but I don’t even know what that’s for, the GP just said it might be a good idea?!

If I knew what it was then I can help the best I can minus all the worry that I’m missing something