I think I have EDS and pots - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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I think I have EDS and pots

Katie2333 profile image
3 Replies

Hello everyone I am new here but I’m pretty sure that I have a form of EDS. I am not hyper mobile but never tolerated anesthesia, have blue sclera, and recently started to have joint unstableness and I started a bruising easily. I think my skin is thinner, I do not heal quickly and I’ve also noticed that the skin on my eyelids has started to droop. I definitely have pots as well and all of these symptoms started about two months ago. Does anyone else not have hyper mobility? I’m really scared that it’s the vascular type…

3 Replies
cyberbarn profile image
cyberbarn

Hi Katie, The scariest thing is always the unknown. Have you talked to a clinician about this?

You might want to have a look at the RCGP toolkit and discuss it with your GP. They will be able to guide you on whether this is under the EDS umbrella or if it is a different connective tissue disorder.

rcgp.org.uk/clinical-and-re...

EDS is something that you will be born with. There are many other conditions that affect skin and tissues where the symptoms start later in life, so it would be best to have professional input.

Katie2333 profile image
Katie2333 in reply to cyberbarn

Hello, thank you for your response. Unfortunately my GP dismissed all my problems as depression and anxiety, even though I don’t have a history of either… I guess I’m just wondering if anyone has EDS without being hyper mobile? And my GP reluctantly gave me a referral to a cardiologist and neurologist, but I’m not sure what type of doctor to go to to talk about getting a diagnosis.

cyberbarn profile image
cyberbarn in reply to Katie2333

It is a shame that your GP is being old school and blaming non-existent mental health problems for things. In some areas rheumatologists can diagnose connective tissue disorders, and cardiologists can rule out certain ones. But in the UK there is no one doctor that can or can't diagnose. The reason the RCGP came out with the tool kit is so that GPs can diagnose. Could you try a different GP at your surgery?

And yes, hypermobile joints do vary from person to person because it is spectrum. Some forms of EDS have mild hypermobility, others are very hypermobile. This is part of the reason why they came up with Hypermobile spectrum disorder. It is for those people that don't quite make the criteria of hypermobile EDS. My son is way more hypermobile than I ever was, and I am hardly hypermobile now because I am older and arthritis has tightened up my joints, but at the same time they are more mobile than most people my age.

I assume you have had a look at the EDS UK website?

ehlers-danlos.org/what-is-e...

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