Hyper-mobility, is it worth a formal diagnosis?

[Sulking]

I’m 29; I constantly ache, I always feel fatigued, I have chronic issue with back pain, hips clicking/pain, jaw clicking/pain.. just generally feel like I’m falling apart all of the time. I never feel 100%.

I was at out of hours this evening for pain in my calve radiating to my knee/thigh and groin. The injury doctor asked me if I’ve ever been diagnosed with a hypermobility issue; I said no (because I haven’t) and tbh I was 100% sure what it means, so I said “is that like the thing where you can bend your fingers back” and I kind of demonstrated what I meant.. thinking my hands are normal and the clinician looked shocked, asked me to do it again then said I should make an appointment with the GP to look into hypermobility; as it can cause a range of issues including general inflammation.

I’ve done some reading on it this evening and I tick a few boxes for it I.e:
-fingers extend backwards more than a certain amount.
-i can easily flex my thumb to touch my forearm.. maybe even beyond it
-mg elbows slightly hyperextend.
-I’ve recently had investigations into my digestive issues that they’ve put down to IBS. —constantly fatigued
-always aching somewhere
are just a few to name.

my question is; will getting a diagnosis change anything for me. It sounds pretty.. untreatable. I’m planning on ringing the GP tomorrow but I have a feeling they’re going to brush me off.. I’m just wondering how hard I should fight to have them properly run some tests and give me a diagnosis?

has it helped anyone else?

Hypermobility is technically untreatable, but a diagnosis can make it easier to get the right care generally.

For example, my blood pressure is very low because of hEDS and POTS. When I was recently in hospital for something unrelated, the ICU doctor recognised the low reading as close to my normal, because of those diagnoses, and that meant I wasn’t kept in longer unnecessarily.

Getting the correct diagnosis of anything can help avoid confusion, mismanagement and missed support in the future. If it's on the table, take it.

Take a copy of 'The Ehlers-Danlos syndromes (EDS) GP Toolkit' to your appointment. If you tick the right boxes, they'll have no other reasonable option but to refer you, unless your LHA doesn't do hEDS diagnoses (some don't).

Definitely get a diagnosis. I have it and once it was confirmed it changed all medical conversations after that point. A big example is how much I struggled with pregnancy, I was completely unable to walk after 25 weeks. It also informed my birth plan as doctors ruled out a vaginal birth for me as my son as a big baby and they were worried that if they had to perform a manoeuvre for shoulder distocia that they would dislocate my hip. The only way safe medical decisions could be made for me is by giving my doctors all the facts.

I have EDS and I think a diagnosis has helped me. I think doctors take stuff more seriously. My dentist understands when I say that I need more local anaesthetic than normal and to wait longer for it to work I’m not been dramatic. They’re letting me be sedated for a tooth removal.

i suppose the downside is any pain you have from here to eternity you run the risk of being fobbed off with “well you have eds/hypermobility” that’s what’s causing the pain when it might be something else. 🤷‍♀️