Vascular EDS...not even sure where to start

Vascular EDS...not even sure where to start

Hello people! I'm doing so-so of late. The Simponi may not be working so well anymore - I have an appointment with my biologics clinic in a month but I have no idea what I'm going in for, so I will have to call in and find out.

Recently, my ex-husband called me and asked me to get a referral for EDS. I scoffed because I don't think of myself as hypermobile. My joints don't bend, they pop! I do have a few indicators, like virtually see-through skin - this is my inner elbow, but I look like this everywhere - like a roadmap), and I can bend my fingers back into the 'flying bird' (I asked my Dutchman if he could bend his fingers back with his palm flat on a table - when I did it he looked a bit green and said 'Darling, no-one can do that!). I can bruise from a stern look, but I've never really though about EDS. However my ex-husband met someone with vascular EDS recently and they were gracious enough to talk about their illness, at which point my ex promptly rang me and said 'This is you, every single symptom.'

I'm not really sure what the overlap between EDS is and RA or Lupus, or even how to get anyone to look into it - if it's anything like the last ten years, I shudder to think of what a nightmare it will be to convince my GP to give me any referral or take me seriously on this. I'm not entirely certain I'm convinced myself - for me, all this is normal, so I don't know how to describe a symptom when I don't know any other way of function, but it might answer some questions about why paracetamol and ibuprofen are next to useless, why my joints pop and overextend (I am wearing knee splints now as I took a bad step a few days ago), and might help to give me another ace in the hand I've been dealt.

Advice welcome!

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  • Hello there

    Possibly your best source of advice & info will be through this link:

    Also, There is a Healthunlocked ehlers danlos uk community here...several of us are also members of that community

    Another excellent website which includes good info on EDS is:

    I'm EDS vascular type...understanding this has helped me come to terms with many of my connective tissue disorder issues, and to anticipate + monitor the problems I'm prone to.

    Wishing you all the vvv best with this...could be a big πŸ’‘πŸ’‘πŸ’‘πŸ’‘πŸ’‘ moment for you. There are people with all sorts of immune disorders + also EDS & other forms of hypermobility

    πŸ€πŸ€πŸ€πŸ€ coco

  • thanks for this - apologies for not responding sooner, I've been struggling a lot. On the upside I have an appointment soon and I got to see one of the better GPs in my surgery who not only prescribed me some really good pain medication for my flares, but also wrote to my rheumy to investigate for vascular EDS. It's weird, I never really thought of myself as EDS but as I look around, it's like 'oh...that range of movement isn't normal?' I honestly had no idea...I haven't known any other way. So I guess we will see.

  • No prob! Am v sorry things are rough...and am glad you've got this appt...and the pain med is really helping. My EDS diagnosis has meant a great deal to sure diagnosis can mean a lot for you too....take care & please post updates when you feel up to it πŸ€πŸ€πŸ€πŸ€

  • Just a quick update on this as I saw my rheumy yesterday: he was uncertain as he didn't know much about vascular EDS (he looked it up on the computer while I was there!) but when read and did an examination, he was surprised to say 'I think this is something we need to take seriously. It's very interesting, I wouldn't have considered it before now.' When he says 'interesting' in that particular tone of voice, I know there's something up! So I have a referral to the EDS specialist clinic in London coming up, and a further scan to keep an eye on my aorta in the meaning, which probably some further investigating into why my blood pressure is soaring.

    At first I really wasn't convinced - I know how easy it is to read something on Google and then suddenly think you've got it, but his reaction now has me reeling a little bit. On the one hand, great if it adds another piece to the puzzle...on the other hand, another diagnosis maybe? Well, yay for that :/

    I'm also swapping to etanercept as the golumimab is no longer working. I'm starting to worry now as we're running to the end of the medicinal chain and I'm just getting worse by degrees. Right now Im just determined to enjoy life as much as I possibly can because my function is getting worse over time and I don't want to wish I'd done something at a better/more 'able' season.

    Cheers for the advice and support! Now we wait and see.

  • Am so glad to have your news

    This IS sobering AND encouraging....methinks you're in a BIG πŸ’‘πŸ’‘πŸ’‘πŸ’‘πŸ’‘passage....your determination & resourcefulness & philosophic take on your stuff throughout recent years have been impressing me SO GLAD & RELIEVED your diagnostic picure is being expertly clarified. And I am thinking πŸ€πŸ€πŸ€πŸ€πŸ€ this gives you & your medics a much better shot at informed targeted treatments...please feel free to PM me...and I hope that if you feel well enough you'll be posting updates here on forum (+ maybe on the HU ehlers danlos support uk forum: people there are bound to be knowledgeable & V interested...several of our lupus uk forum friends are three as well)


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