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Ehlers-Danlos Support UK

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pigment dispersal syndrome

Hiya Has anyone had PDS, or have any knowledge whether it’s associated with EDS? My rheumy has dx’d me with hEDS. Thanks a lot

Hiya Has anyone had PDS, or have any knowledge whether it’s associated with EDS...

MEGS53

•15 days ago

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Hypothyroidism

Anyone else with hypothyroidism? Does being undermedicated for your thyroid make your eds worse and if yes then in what way? More hyper mobile? I'm suspecting...

Anyone else with hypothyroidism? Does being undermedicated for your thyroid make...

lisan1

•1 month ago

2 Replies

Neuropathy treatment with POTS/postural hypotension?

Hello, I was wondering if anyone has tried any treatments for neuropathic pain that have worked without causing autonomic issues? The common options like...

Hello, I was wondering if anyone has tried any treatments for neuropathic pain...

aqt1

•3 months ago

3 Replies

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HSD with Primary Billiary Cirhosis

Hi everyone, I was just wondering if anyone has Hypermobility Spectrum Disorder and has also been diagnosed with PBC? Thanks

Hi everyone, I was just wondering if anyone has Hypermobility Spectrum Disorder ...

MSJT

•4 months ago

4 Replies

After some advice

I'm 57 yo post menopausal woman with hypermobility and POTS (POTS only diagnosed in 40's after much pushing with medical profession). I take HRT and meds for...

I'm 57 yo post menopausal woman with hypermobility and POTS (POTS only diagnosed...

Lizzog

•5 months ago

4 Replies

Normal process or am I being dismissed?

Bit of a ramble incoming. I'm 24 and have had symptoms such as generalised stiffness & aches, back & wrist/knee pain since I was about 8. I noticed in my teen...

Bit of a ramble incoming. I'm 24 and have had symptoms such as generalised stif...

PurpleRing

•6 months ago

3 Replies

Sedation

Hello! For years now been having issues swallowing. The hospital want to do an endoscopy (hope that's the right word!) However for the last year I've been...

Hello! For years now been having issues swallowing. The hospital want to do an e...

PoTs_lass

•6 months ago

8 Replies

Shoes, shoes, shoes!!!!

I'm at the end of my tether with the whole suitable shoe drama. My daughter who is now 14 has to wear orthotics specially made by podiatry who, along with a...

I'm at the end of my tether with the whole suitable shoe drama. My daughter who...

Brychni

•6 months ago

5 Replies

Sleeping position for hypermobile shoulders?

Hi everyone, new poster here!I'm on the joint hypermobility spectrum, and was wondering if anyone here had any tips on finding a position to sleep in that...

Hi everyone, new poster here!I'm on the joint hypermobility spectrum, and was wo...

papersnowdrop

•6 months ago

8 Replies

dentist?

Hi everyone, We're looking for a dentist in the UK, hopefully close to London or even in the surrounding area that knows about EDS. Can anyone recommend...

Hi everyone, We're looking for a dentist in the UK, hopefully close to London...

HappyGreenBean

•6 months ago

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Has anyone with JHS/hEDS noticed any improvement with...

... hypothyroidism treatment? If so, did T4 alone help or did you need to add some T3 into the mix? ... Methylfolate as suggested by researchers at Tulane...

... hypothyroidism treatment? If so, did T4 alone help or did you need to add so...

Schilddruse

•6 months ago

5 Replies

EDS and LS?

Hi there, I was Dx with EDS Type III back in 2013, and have been in the recent years had Lichen Schlerosus symptoms . My gynae initially said it was eczema...

Hi there, I was Dx with EDS Type III back in 2013, and have been in the recent ...

moos

•8 months ago

2 Replies

Am I hypermobile or just flexible?

I am what I’ve classed as flexible for a long time and seem to meet a few points on the Beighton scale from judgement at home. Can I see a physio in the uk...

I am what I’ve classed as flexible for a long time and seem to meet a few point...

Charlie276

•8 months ago

8 Replies

Could my son have Ehlers-Danlos? Who to ask about diagnosis?

Hi everyone, I've joined the group today as I'm not sure if my son has hypermobile EDS and I'm not sure where to turn and what to do next. He has lots of...

Hi everyone, I've joined the group today as I'm not sure if my son has hypermob...

CN4321

•9 months ago

6 Replies

cold after eating

I get very cold after eating. Anyone know anything about this? Thanks.

Berniz

•9 months ago

1 Reply

no sweat in heat and humidity

. It was 85 and weather said it felt like 95. I went for a walk for half an hour. I did not sweat. Is this an issue?

. It was 85 and weather said it felt like 95. I went for a walk for half an hour...

Berniz

•9 months ago

1 Reply

Does this sound like MCAS

Hi there. I have a diagnosis of HSD but my specialist EDS physio and GP both now think it is actually HEDS due to recent prolapse and confirmation of high...

Hi there. I have a diagnosis of HSD but my specialist EDS physio and GP both now...

Winter_night

•11 months ago

13 Replies

Why did they let my shoulders get so bad?

So, I have a problem with dislocating and subluxing my shoulders. It has been happening for nearly ten years. It started with every other month and then every...

So, I have a problem with dislocating and subluxing my shoulders. It has been ha...

Fuunycat

•1 year ago

8 Replies

Allergic Reactions and Mass Cells

Hello, I have recently been diagnosed with Hypermobility EDS, via a Consultant who I was seeing for sudden non ige allergic reactions. During an hour's...

Hello, I have recently been diagnosed with Hypermobility EDS, via a Consultant w...

Justdoit2015

•1 year ago

3 Replies

Sudden stabbing pains

Hi!I was wondering if anyone else is struggling with this and maybe knows what causes it and something to help it. My hip sometimes gets really sore which is...

Hi!I was wondering if anyone else is struggling with this and maybe knows what c...

Idontknoooow

•1 year ago

3 Replies

Recommendations for an EDS specialist in London?

Hi there. Thanks for taking the time to read my post. I have recently been diagnosed with PoTs and I also have fibromyalgia and erythromelalgia. At my recent...

Hi there. Thanks for taking the time to read my post. I have recently been diagn...

Winter_night

•1 year ago

4 Replies

Mother-in-law with EDS has very low Potassium readings

We thought Mum had dementia and the EDS (diagnosed) means she lives with pain and is unsteady. It just transpired that she has had a long term kidney infection...

We thought Mum had dementia and the EDS (diagnosed) means she lives with pain an...

liverish

•1 year ago

1 Reply

Hi from Manchester!

Hi people! I’ve accidentally stumbled across this site, so quickly signed up. Hoping to communicate with people with similar experiences and issues. Not sure...

Hi people! I’ve accidentally stumbled across this site, so quickly signed up. H...

GrannyGhee

•1 year ago

1 Reply

Anyone had any luck getting diagnosis/treatment for Craniocervical instability

I was referred for an upright MRI by my rheumatologist last June but my Gp flat out refuses to make an individual funding request for me to have it and...

I was referred for an upright MRI by my rheumatologist last June but my Gp flat ...

Taima

•1 year ago

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vADS presentation vs hEDS, especially on darker skin tones

I am under investigation with NHS at the moment, at my request, given I think a lot of what I have experienced over decades corresponds to EDS. The NHS physio...

I am under investigation with NHS at the moment, at my request, given I think a ...

Buffstera

•1 year ago

17 Replies

Have any of you been diagnosed with Loeys- Dietz Syndrome? My results came back in May 2022 TGFB3- syndrome 5.

I was tested my my rheumatologist due to Ehlers Danlos, multiple hernias beginning age 18 months, cervical instability, and my mother passed away from clotting...

I was tested my my rheumatologist due to Ehlers Danlos, multiple hernias beginni...

KellyInTexas

•2 years ago

2 Replies

My wrist was in fact dislocated

I may have surgery because someone looked at my wrist and misread an x-ray. I knew it didn't feel right and was told it was soft tissue damage. Gladly because...

I may have surgery because someone looked at my wrist and misread an x-ray. I kn...

Fuunycat

•2 years ago

7 Replies

Local medics or NHS assuming EDS is only a MH condition

I have been surprised recently by the assumption that EDS and associated distress is a Mental Health condition. Excuse the length but I would like your input -...

I have been surprised recently by the assumption that EDS and associated distres...

0101

•2 years ago

20 Replies

Best Trainers for a City Break

Does anyone have any suggestions for good trainers for walking around the city, preferably white, stylish and good to go with dresses etc? I always have a...

Does anyone have any suggestions for good trainers for walking around the city, ...

Aspasia

•2 years ago

2 Replies

hiring a mobility scooter in Poland?

I am going to Warsaw for hols and wonder if anyone knows how I can hire a mobility scooter there? Emma

I am going to Warsaw for hols and wonder if anyone knows how I can hire a mobili...

Trickysite

•2 years ago

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Posts - Ehlers-Danlos Support UK | HealthUnlocked

Ehlers-Danlos Support UK

pigment dispersal syndrome

Hypothyroidism

Neuropathy treatment with POTS/postural hypotension?

HSD with Primary Billiary Cirhosis

After some advice

Normal process or am I being dismissed?

Sedation

Shoes, shoes, shoes!!!!

Sleeping position for hypermobile shoulders?

dentist?

Has anyone with JHS/hEDS noticed any improvement with...

EDS and LS?

Am I hypermobile or just flexible?

Could my son have Ehlers-Danlos? Who to ask about diagnosis?

cold after eating

no sweat in heat and humidity

Does this sound like MCAS

Why did they let my shoulders get so bad?

Allergic Reactions and Mass Cells

Sudden stabbing pains

Recommendations for an EDS specialist in London?

Mother-in-law with EDS has very low Potassium readings

Hi from Manchester!

Anyone had any luck getting diagnosis/treatment for Craniocervical instability

vADS presentation vs hEDS, especially on darker skin tones

Have any of you been diagnosed with Loeys- Dietz Syndrome? My results came back in May 2022 TGFB3- syndrome 5.

My wrist was in fact dislocated

Local medics or NHS assuming EDS is only a MH condition

Best Trainers for a City Break

hiring a mobility scooter in Poland?

Search posts

Latest poll

What other conditions have you been diagnosed with in addition to EDS?

Topics

Archive