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Ehlers-Danlos Support UK
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Feel like being ignored by Rheumatologist and GP not sure what to do next?

Hi guys, I posted here a while back because I had suspected EDS (probably Type 3...

Family with vascular EDS but I have hypermobility...

Hello So on my mother's side there is Vascular type EDS unfortunately. My broth...

The puzzle of EDS

My son (26) was diagnosed with hEDS & POTS this year after 16 years of pain and ...

A little worried...could I have vEDS?

Hello, I'm Lisa, 29 years old and here goes my story... Back in 2017 I went to m...

Paralysis of colon, anal prolapse, way forward?

Hi - my daughter 26 has for many years been suffering from extreme digestive iss...

Domperidone side effects?

Has anyone else tried domperidone? Been told I have Gastroparesis and really wan...

Genetic Testing St Mary's Hospital Nightmare

Today I had my assessment at genetic testing at St Marys Hospital Manchester. I ...

Gastroparesis treatment (drugs or natural?)

Been suffering with stomach problems for months, posted a little while ago when ...

Where to get help on diagnosing EDs.

Hi, Where can I go to get genetic testing done for Ehlers Danlos. I live in East...

Pelvic Floor Exercises

So just needed some help and advice, my blood pressure doctor (for my hypotensio...

Stretchy eye and face skin... HELP

My eds is making my facial skin more elastic as I age.. My upper eyelids are sta...

I am 28 Year old male and I have EDS (Ehlers-Danlos syndrome) Everyone tells me that I have a soft body like a female. Is it related to EDS?

Hi Everyone. Last year I found out that I have EDS. I had hypermobility since I ...

Genetic Medicine Referral

Hello All. I recently had an appointment at a gynaecologist who told me it is n...

Struggling to cope

It is likely that I have had fibromyalgia and elhers danlos syndrome since 12 ye...

Hypermobile EDS??

Does anyone here have hyper mobile EDS and sleep with eyes partially open, have ...

Surgery

Had surgery on my foot I had a the same surgery on my left foot painful been on ...

First timer

Hi, First time I've done a post of my own but I've been tempted plenty of times ...

Referral from rheumatologist for suspected ehlers danlos syndrome. With lupus like symptoms. Advice please.

I have been back to my rheumatologist due to lupus like symptoms. An endocrinolo...

My wife has eds type3 but it's wrecked both our lives

This evil horrible disease has finally played it's part on our marriage, in the ...

Afraid of vEDs

Hi all, I’m looking for some insight or opinion from those who have been through...

Wife has hms +eds type 2 when was the last time you both spent time as a husband and wife like walking hand in hand down street??

Hi I'm 42 and my wife is also 42 and she has this horrible condition, Last year ...

Tethered cord

Tethered cord symptoms? I have heds and doctors think I have a tethered cord ha...

EDS lower back pain/ muscle twitching

Hi. Does anyone have muscle twitching with small fiber neuropathy? Also, does an...

Looking Helpful for helpful information on best treatment for Ehlers danlod

Hi I'm new here. What does everybody find helpful with there Ehlers danlos. Ect ...

Designing an aid for hypermobility

Hello, my name is Lauren and I’m a student from Imperial College London. My grou...

Mattress advice

Anyone got any advise on the right bed mattress to use. Sleep an issue and my m...

Working how do you cope and not working thoughts please?

I'd like to know how you handle day to day life at work if you can hold down a j...

New medication

Hi all hope we are all coping! I’ve recently been out on some patches called mat...

I hate this invisible syndrome

I'm newly diagnosed trying to get my head around all this and I'm still convince...

Personal independence payment

Hello, hope everyone’s well, have been thinking about applying for Personal inde...
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