Ehlers-Danlos Support UK

Possible ignorant question - joint concern

Hi everyone,

I've tried looking for an answer but can't figure it out...

I'm going to a rheumatologist soon for a hopeful diagnosis of ME.

Ever since I can remember I've had numerous issues with my joints.

Osgood schlatters at age 14 followed by tonnes of ankle and knee injuries.

I'm broke my ankle in 2015 ( I'm now 36 years old) and in 2016 shattered my ankle and leg.

I've probably injured my ankles about 20 times at least and had ongoing knee pains.

My wrists click and are very weak; they give way from time to time - I need to 'flick' them to put them back into position. I used to have the same thing with my ankles. Especially when getting up from low levels like floors or low sofas - I'd have to 'flick' my ankle into position before I could use it. Almost like it was slightly dislocated.

Does anyone know what this might be?!

I'm sure the rheumatologist will know but I'm hoping to be a bit more educated before I go for my appointment. I also get terrible joint aches and pains. I'm tired most of the time. Even more so after activity- hence the ME diagnosis (I had severe glandular fever at 17)

Also I forgot to say these things too - I remembered them last night whilst tossing and turning at 2am!

My jaw clicks every time I eat and has done since I was a teenager - and sometimes goes to the point of feeling like it 'pops' out of place. I had a brain MRI recently and they had to hold my head in place (standard procedure) - my jaw hasn't been the same since and now really hurts on the left hand side - I can't bite down properly without pain :(

And if I'm in the front car seat and need to twist to reach to the back seat or the space behind the front seats my shoulder often does that partial dislocation thing (well it feels like that anyway) and then it feels like I'm stuck - and it really hurts, and I need to kind of flick and wriggle to get back into position again. The same thing happens if I'm reaching under a table or under the sofa trying to get to something. My shoulder suddenly 'goes' and then I'm stuck in that position and I'm in pain until I can realign myself - and still sore after that.

Is this totally normal (I mean for normal people, and I'm just worried about nothing) or it is a bit unusual?

I've heard about the beighton scale and I can't do any of the super bendy stuff, if anything my joints hurts and I'm less bendy than most.

I've broken my fingers quite a few times through netball (they seem to break easily) and I can't remember going a few months without a soft tissue injury.

I'd really appreciate your advice/thoughts.

Thanks 🙏

4 Replies

Could it be a hypermobility syndrome? I think osteogenesis imperfecta is where you break bones very easily. I have EDS which is also a hypermobility syndrome (umbrella term for illnesses that cause hypermobility as a symptom) you can check out the HMSA website they have so much info on hypermobility syndromes and how they affect us and the signs and symptoms to watch out for, the eds uk site has a page that can help you prepare for your rheumatology appointment also, I'll look for the links and post them in a comment for you x

1 like

This is the HMSA, have a scroll down and it explains the types of HMS

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The EDS UK one on hypermobile EDS which is most common, if you need any help or more info feel free to send me a message! I was diagnosed 2014 with EDS and hypermobile in 1997 but never received any form of help or support and had to go down the diagnosis route alone so it was pretty scary and made me very anxious

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And how to consult with your doctor and how to prepare, if you need any help on how to prep for your appointment again feel free to message me I can tell you what it was like for me and what I wish I had done or how I could've prepared better x


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