Ehlers-Danlos Support UK
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Hi, I'm (potentially) new

Hello hello! I'm on a couple other boards here, and thanks to Barnclown was told about this place as well, so I would like to give a brief introduction. I've been diagnosed with seroneg RA, fibromyalgia, and have suspected lupus for some time although bloods are almost always inconclusive. Recently, my ex-husband started dating someone with vascular EDS, and a few months ago he called me and said 'You need to get this checked out. Every single symptom is you.' I was a bit dubious - I'm not especially 'bendy' - maybe due to the RA, but also potentially due to being a former bodybuilder; my muscle and bone density might have masked the connective tissue problems. However, the more I read into things (stretchy, see through skin, bruising in a strong breeze, healing from even mild surgeries is a nightmare of infections and skin refusing to knit, forming deep pits of scar tissue, nearly bled out when pregnant, several miscarriages), the more I thought it might be a possibility.

This week I went to see my rheumatologist about my RA, but had also mentioned the vascular EDS. At first, he seemed to want to humour me, but when he realised there's blue sclera round my eyes (I didn't even know I have this) he became more interested and ran through a few tests. My skin is definitely stretchier than I thought it was (that would explain why I've had 'bingo wings' and stretch marks all my life no matter how hard I trained!), my elbows seem to hyper extend and skin is definitely a lot more see-through all over than I previously knew. My blood pressure has been going through the roof and my GP hasn't been taking it seriously, but now my specialist is on the case. He has requested I have a referral in London as well as a scan of the aorta in my abdomen. I know him well enough now that when he says 'Interesting' in a particular tone of voice, he has found something.

Now, nothing is confirmed yet, but I'm reeling. I have friends with Type 3 EDS and so I'm familiar with everything they go through, but I would have never thought in a million years this is something I might have myself. I'm at an utter loss, and while I'm trying not to consult Dr Google or read too much into things, I do have the EDS UK sites in my bookmarks and the more I read, the more I think 'Wow, this may actually be me'. I've no idea what to do with the information yet, but....yes, there it is.

I have no idea what happens in the London clinic. Anyone have any advice or could give a reassuring word? What do I do now? I am of a mind to go to the GP and ask for help with the blood pressure but I don't want to kick up a fuss yet until I know for certain what is going on (especially as my experiences at this GP surgery have been a bit of a mixed bag, and I'm hesitant to get another lecture of Just Lose Weight). In any event...this is me, thanks for having the group, and I guess we will see what we shall see.

6 Replies

Oh Silvergilt! Its' frightening isn't it. But once you have a definite diagnosis you will then be calm and will be on track for gaining good health. Remember there are many different types of EDS, so DON'T focus on vascular. All the types of EDS, apart from hypermobile type IIi, can be confirmed by genetic testing. This will be done at the London EDS clinic. Your symptoms and appearance are consistent


with type III too. Make sure you get that referral to London EDS specialists. I completely understand your reluctance to approach your GP. I was ridiculed by ALL doctors for 2 and half years, becoming bedbound/housebound for a year and half before I gained an accurate diagnosis from a cardiologist. I achieved this by proving I had PoTS. With this in mind borrow a home blood pressure machine. Take regular readings throughout the day. I propose this just to see if your high


Sorry! My tablet is being difficult! Take note of your BP and heartrate. If you wish for further information on this contact me, and look on PoTS UK website. Once you have had a referral you have to have an appointment within 12 weeks, so you will be diagnosed in a very short time. Remember, despite reading with interest and gaining knowledge from Dr Google and the experience of other EDSers, the condition is as unique as each of us. There are ENDLESS treatments/supplements/nutrition that enable EDSers to have a long and productive life. I, diagnosed June 2016 HEDS, dysautonomia, PoTS, have gained great healing from Ehlers Danlos Syndrome and Polysaccharide FB page. I hope your journey to diagnosis is troublefree. Gentle hugs.

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Hello and thank you for your replies - sorry I haven't got back to you till now! Tomorrow is the scan so we will see how that goes for now, I'm not sure what happens after that but I'm doing my best to just keep on keepin' on till I go to clinic. It's a bit of a struggle as I have other conditions and I'm going to be swapping medications, so in between meds-limbo pain will be soaring :/ but I'll manage.

Once again, thank you! It's appreciated.


Just leaving an update here - I've had my scan and everything was ok, so now I'm just waiting for the appointment - which apparently won't be till January or February. I've been testing my blood pressure at home which is unfortunately rather high, and has been noted at my rheumy, who insist I should be on some form of medication. My GP however just thinks I'm being lazy and could lose weight and then everything will be fine. I'm getting a bit stressed (which doesn't help of course) as I know my blood pressure is off, but no one is listening. It's not even an option to get a new GP - I live in a rural area and there isn't another GP for literally miles.

So I'm just trying to hang in there and do what I can, cutting caffeine again, doing more yoga, going to cut back on processed foods to decrease salt intake and just hope to hang in there. Not much else I can do.


Hi there, giving a quick update: I spoke yesterday with the clinic advisor about my family history. It's a bit patchy as I haven't spoken to my family in decades, but there was enough evidence on my father's side of the family that they want to see me come in - the person who called me about family history spoke to consultant right after speaking to me, and called me back within five minutes so I guess evidence definitely pointing in that direction.

Apparently, my rheumatologist scored me a 4 on the Beighton score, so it definitely seems I am on the right track. To be honest, I'm really kind of bricking it now because it seems to me there isn't really much anyone can do if it turns out I have vascular EDS, but it is filling in some pieces to the puzzle. The Dutchman has now told me in no uncertain terms I am not to lift anything over 4 kilos. As a former bodybuilder, that's harsh! But I concede the point; I've been having a lot of problems with my heart racing and feeling dizzy and even a small amount of work in the garden lifting a shovel of dirt has me gasping for breath.

I'm working on getting my blood pressure down, but I'm still kind of trying to avoid reading too much about things as I don't want to stress myself out over a maybe. It will be months before I even have an appointment, so I'm just trying to do what I can.

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