Hypermobile symptoms/diagnosis question

[Soupwithstring]

I've recently been told I'm hypermobile. I'm 47! Having googled this further, it makes total sense.

I have always been bruised and insanely clumsy - DH shakes his head in disbelief as I walk into the bed frame again.

I have tendinitis (confirmed by consultant and MRI) and various tendon issues

Hitchhikers thumb/can bend my little finger back 90degrees

Prolapse. All of the types. (incl surgery)

I've been tired all my life. I slept at lunchtime for two hours until I went to school. I spent my teens and 20s sitting on the toilet during the day in order to have a short nap. In my 30s I had to pull over on the school run to sleep once I'd dropped DC. I sleep in my car or on my office floor now during the day if I need to.

I developed Raynauds in my 30s and have chilblains as a result.

I can pull my skin away from my arm and hand about an half an inch or more. I asked my DC to do the same thing and they couldn't pull their skin at all! I thought everyone could do this.

I've had asthma since I was a child.

Is it worth mentioning all this to my GP? Is there anything I should get checked?

My parents deny any of these symptoms but my mum also denies she had any kind of menopause symptoms 🙄

Do you dislocate? My daughter dislocates something roughly every 2 weeks! She just pops it back in.

GPS aren't particularly interested in my experience. Not sure if there is any real benefit to having it formally diagnosed. My daughter has other diagnoses which have proved useful so I never pushed it.

Often it's about understanding your condition and knowing to avoid stuff that other people can cope with easily.

Have you read up on Ehlers Danlos syndrome? Hypermobility is one of the symptoms.

I was going to say the same. My friend has EDS and is very similar to you. She can do the skin thing and is hyper mobile. She hadn't had any prolapses but her sister has.

www.ehlers-danlos.org/

Yes. EDS does sounds like my collection of things - but stuff it had never occurred to me to complain about or see a GP about.

No, I have never dislocated. But my knees quite often give way which is weird. And I often have to click my elbows, always my hips if I sit for too long, like when I'm in traffic. I was told I had no arches as a child but I suspect it was my ankles falling in. My knees always hurt and my patella can move an inch each way.

I was just wondering as these things seem to be connected to auto immune stuff and I wondered if I should be checked for anything.

It's really bemusing. I was told it was a connective tissue problem, but how do you get to my age before you realise you have such a thing?!

I've got an EDS diagnosis. Apart from the bit of paper it doesn't really change anything (so far).

Thank you all. Maybe I'll mention it when I go and talk about my Raynauds next time I'm in.

I think I fell into that Google trap of reading that a connective tissue problem can also link with heart issues and my mind raced, particularly as I've had ectopic beats and pre-syncope regularly since my early 30s.

Bonkers as I'd never heard of any of this until a few weeks ago 😂

@Soupwithstring I was diagnosed with hEDS when DS was a baby but in hindsight it was there all along, just no one was interested in joining the dots! I was in my 30s but it made my Mum in her 50s realise she had a lot of the same issues.

My DS10 has hyper mobility and is under a genetic doctor (for learning disability). He has had a heart scan as part of the investigations which was fine. He hasn't been formally diagnosed with EDS but we could push for it. He was 6/9 on the hyper mobility scale apparently!

This is it. I had a massive Ah Ha moment as I read the list!

@Bobbybobbins that's really interesting. I did have an EKG at the hospital and also a 24hr one but they were both when I wasn't having the beats. This was in my 30s.

Yes I had a 24 holter monitor as part of the diagnosis, they check for mitral valve regurgitation.

Tbh the whole thing is wildly annoying. Start Pilates now, in an attempt to remain as structured as possible - you'll end up like a piano that's fallen down the stairs otherwise.