Ehlers-Danlos Support UK | HealthUnlocked

Ehlers-Danlos Support UK

2,597 members843 posts

Formal diagnosis- worth it?

Hi, I’ve just spoken to doctor and she says it sounds like my joint pain is rela...

Anyone else with EDS have severe asthma?

I’m just wondering if anyone else is in the same situation as me and has EDS and...

Choice of having children

Hi there, I’m a woman of child bearing age suffering greatly with EDS (electric...

Vaccine & EDS

Has anyone who's had the covid vaccine notice their EDS symptoms suddenly get wo...

Bad Reaction to Urommune

Hi, I've been taking Urommune for the past 7 weeks and it's been such a rollerco...

I have pots but this is new for me, has anyone experienced anything similar?

My heart rate is normally between 30 and 130 and the last few days it has been g...

Has anyone been to a residential pain management course? If so what was your experience.

No including guys and at Tomas or the private clinic, as I won't be able to go t...

Possible EDS? (15M) Have Fibro + CFS

Hi there, I am a 15 yr old boy looking for some help with EDS. My cousin has su...

Trouble with getting initial diagnosis

Well this is my first post so if I am going on I apologise! I have been diagnose...

Big artery in neck

Hi guys! I don’t want to sound silly but I have a huge artery in my neck (obviou...

For those with pectus carinatum (I think that’s what it’s called)

Hello, does anyone have the protruding bump on your chest? If so, have you gotte...

Possible EDS or hyper Mobility

Hi 34 F diagnosed with ME/CFS, fibro, pernicious aneamia, migraines, ibs, orthos...

HEDS & sore throat?

Hi, anyone with a sore throat here? I’ve had a plethora of symptoms, but one I a...

Postural/low pressure headache (CSF Leak)

Hi everyone, Has anyone experienced a CSF leak low pressure headache? Apparentl...

Fatty Liver Disease

I was diagnosed two years ago with Ehlers Danlos, and just learned I have NALD—I...

Wrists constantly dislocating

Hi there! Hope you are all well. I’m having serious issues with my wrists recent...

Advice on accessing NHS help after private diagnosis

Hi, I have just received my diagnosis of Hypermobile EDS with Marfanoid phenotyp...

Doctors

Hi Im a newbie from Wales who has had to explain to every doctor Iv met with in ...

Suspected Ed’s gastro problems

So I have been to the gps numerous times now I do think it’s possible that I ha...

Flecainide

I have started taking 2 x 50mg flecainide after being on bisoprolol for a year. ...

New diagnosis for 18 year old

Hello, my 18 yr old daughter has been diagnosed with Hypermobility Syndrome and ...

4 year old with constipation

My daughter is 4 years old and has always had huge GI issues. She can eat a hand...

Any mums in wheelchair or crutches had a c section???

Looking for others experiences, that have to use crutches and wheelchair perman...

Pulsating artery

I keep noting a pulsating artery in my hand, it’s very worrisome. What do y’all ...

HEDS

Hello all warriors 🦓🦓🦓, I’m michelle, hoping to make some friends on here who...

Eds and pregnancy

I was just wondering if anyone can share their stories on getting pregnant and h...

Snap crackle and pop

Hey guys and gals, I’m sure we’re all aware of the daily clicks n grinding our ...

Newbie signed!

Hi everyone! Ive just found this wonderful site & wanted to introduce myself & s...

Rectus Sheath pain

Hi everyone - anyone having rectus sheath pain ? Any advice on how to manage wou...

Find the ONE

I just need to know how to find a specialist in my area who can help with a diag...
Write a post or ask a question

About us

Ehlers-Danlos Support UK (EDS) assists those with Ehlers-Danlos. It is a genetic connective tissue condition t...

Read more about Ehlers-Danlos Support UK