Ehlers-Danlos Support UK

EDS, Seronegative Sjogren's or something else?


I have been on the diagnosis treadmill for a while now and late 2017 finally met a Neurologist and an Immunologist that at least think i am genuine and are investigating me thoroughly.

However so far apart from a couple of 1:80 ANAs, my bloods are very normal. So is my salivary gland ultrasound and my Immuno thought there was no point doing a lip biopsy for Sjogrens. He suspects EDS.

EDS may be possible but i am definitely not flexible, dont have stretchy skin and dont meet criteria for the hyperflexible type as far as i can see! There is some family history that may suggest it though and my twin boys have hyperflexible hands. But my husband has more range ofmovement than me so the twins may get it from him!

I have very dry eyes and cant produce tears except for slight reflex moisture. Dry mouth, private areas, nose throat ears skin...list goes on. I have confirmed Lichen Sclerosus which is debatably autoimmune. I have odd autonomic symptoms involving hear rate blood pressure body temperature bowel etc. I have had numb patches randomly on left foot, reduced proprioception involving feet or legs, and prickling in hands n feet, crawling bug sensations esp scalp and phantom itches. Visual and smell oversemsitivities. list is endless.

My question is EDS characterised by SUDDEN SEVERE FLARES involving weight loss muscle weakness joint pain shortness of breath fatigue muscle fatiguability skin rashes esp after sun exposure, sensitivity to sun causing increased symptoms...and by sudden and severe i mean a big significant change out of the blue for no reason??? Because if it is genetic i can understand having a baseline of symptoms that fluctuates and gradually worsens but my flares seem more aligned to aitoimmune flares than what i have read about EDS.

Any information is welcomed please. even better if you can link to research or evidence that i can take to my rheumy.

Thanks so much for listening!


10 Replies

Mine was very slow and crept up on me. Yes to all the symptoms except it is heat rather than sun which makes everything worse (and humidity worse still), and no weight loss. However, these are, as you know, symptoms which are common to a whole range of conditions.

hEDS people don't usually have stretchy skin. They often have stretch marks and easily cut or torn soft velvety skin (mine was in patches but by middle age mostly vanished).

But EDS does present differently in different people and it would be good to hear from others.

1 like

Thanks Jay66. That's interesting about the stretch marks. I have absolutely none after two pregnancies. Not a single stretch mark! My skin seems pretty normal to me, isnt injured easily and i have hardly any scars. I had two caesars and an abdominal hysterectomy and the scar looks very good. I am not convinced this is EDS lol!


It is good that specialists are now beginning to consider EDS in their differential diagnosis. I wish you luck on your journey towards a full diagnosis; people like us often have two or three conditions which cloud the picture. You may still have EDS - hypermobile or classical types are just two of the 14 official types and I don't know the symptoms of them all.

1 like


I was diagnosed with EDS hypermobile type in 2000 by Professor Rodney Grahame after being on the diagnosis treadmill for a few years and after being dismissed and belittled by the orthopaedic doctors. Doctors who told me that I was depressed and that was why I was experiencing such terrible joint pains, not that I had been in so much pain for so long, that I had become depressed😕!

I have a lot of your symptoms and in the past couple of years, I've become more and more convinced that I have SLE, (lupus). I am completely sun intolerant and will get a hot red and painful rash on my face and also get a rash on my limbs if I expose them to the sun. I will also have flu like symptoms afterwards and feel really unwell, so I don't go in the sun anymore. These symptoms came on later in my life tho, although I've never really been a sun worshiper and have never been able to get a good suntan as would burn too easily.

In 2005 I had my first diagnosed clotting events, multiple DVTs and multiple pulmonary embolisms and I have often wondered if I had experienced any clotting events prior to 2000 (or had them diagnosed I should say, as I'm certain that I had clots prior to 2005), would I have been given a diagnosis of SLE lupus as opposed to EDS, or even both? Blood clotting is connected to SLE.

I used to be hypermobile, did gymnastics and ballet as a child but always had pain in my legs when doing anything physical, I just thought everyone's legs hurt when they did ballet or went ice skating etc! Later in life, I'm 51 now, I have become less and less hypermobile due to the pain I suppose.

I also experience kind of 'flares' where I feel flu like, or I have terrible digestion issues and painful bowels for a while, or suffer with much more head pain and migraines than usual for a period.

I am also always scratching my skin as its SO itchy that I can scratch it till I bleeds. Arms, legs, head, back you name it, it itches!!

After having several more pulmonary embolisms, dvts and TIAs, I was also diagnosed with Chronic Thromboembolic Disease, which is just a general term for some sort of clotting abnormality. I think I have the clotting condition APS/Hughes Syndrome and like you I am back on the diagnosis treadmill, trying to get the haematologists and rheumatologists to look at the bigger picture and re-diagnose me.

I too have heart rate issues, very high heart rates on minor exertion and acute breathlessness, which are currently under investigation at The Lane Fox Unit at St Thomas' Hospital. I have recently been prescribed ambulatory oxygen which has really helped me but a lot of my breathing issues are most likely due to scarring in the blood vessels of my lungs, due to the many pulmonary embolisms I've had.

My respiratory doctor is also referring me to Queens Square to look into Autonomic Dysfunction because of my excessively high heart rates however I have been tested for it in the past and was negative. My heart rates go up as a direct result of the amount of oxygen my body needs but I could be wrong, autonomic dysfunction is linked to EDS and lupus and APS, so it's definitely possible that some of my symptoms are related to autonomic dysfunction.

I hope I've not worried you by mentioning all my clotting issues, I'm not suggesting for a moment that you might have clotting problems but I do think from your symptoms that it's possible you have Autoimmune issues.

I think that you should definitely ask for further investigations, or ask to see a rheumatologist who specialises in autoimmune conditions, it's best to get diagnosed as early as possible in life, so that you then know you will be given the most appropriate treatment.

Good luck with your ongoing diagnosis treadmill journey and please keep us posted with your diagnosis progress. Claire ☺️

1 like

Hi leakeadea

Wow that is a lot to deal with! It is such a hard path to navigate, the health system, particularly with less common conditions. I am being referred to my third rheumy which is fun. The first was abrupt and told me i probably had a virus. The second saw my normal blood results and packed meoff to a neurologist at the second appoint. Both rheumies seemed fairly disinterested in my symptoms and history. I have found that specialists have lost the ability to take a thorough history!

The neuro was lovely. Spent 2.5 hrs first visit. Organised autonomic testing which wouldnt surprise me being bormsl cos that is how this stupid body of mine rolls! Dont see him again til April or so. Saw an immunologist amongst all this who did nothing but say see the neurologist. Found an immunologist who has a special interest in sjogrens and as bloods are ok bar borderline ANA he thinks EDS.

I dont think he knows much about EDS however as he couldnt answer any of my questions really, hence the 3rd rheumy referral. I think if docs suspect connective tissue issues, which he does, but no evidence of autoimmune, then they lump you either in the EDS camp or fibromyalgia or depressed lol! So i dont hold a lot of stock in the EDS side of things.

I should get into the rheumy in march so thays good.

It's a journey! Lucky for me my flare from 2016, which knocked me for six, has largely settled and i have just my day to day mild symptoms at present. So i am certainly grateful for that!

Thanks so much for sharing your experiences as it helps to realise you are not alone in it all.


Do let us know what the next rheumatologist says about an EDS diagnosis.

I think that it's very sad how disinterested and dismissive so many specialists/doctors seem to be. I was going to say "seem to be nowadays" but if I think back to when I was searching for a diagnosis 20 years ago, I was still dismissed and belittled!

No one wants to be ill and in pain and when you are all you want to know is why, so you can hopefully get some treatment. I really don't understand the attitude of so many doctors and specialists, why be in the profession if you really don't want to treat and help your patients?

Let's hope that the next doctor you see is a kind and caring one who will help you get to the bottom of your symptoms.

Keep us posted,



Thanks to both of you!


Hi - just a quick update - I had my lung function test today but all they would tell me is my lung volume is on low side of normal; did not improve hardly at all with ventalin (asthma medicine) so is not asthma. I await seeing my specialist late March to discuss other results such as gas exchange and plan from there.

I have no idea about my autonomic testing results. It was a 'good day', and also I didn't see the instruction sheet (brain fog?! lol!) until it fell on the floor when I arrived late to the appointment due to weather/traffic. So was stressed on arrival, had had a coffee and eaten recently. I did disclose this but they thought it would be ok - although have read elsewhere that you are not supposed to eat or drink anything, not water either, for 12 hrs before the test from other international testing sites. At any rate, the results will be what they are.

It was pretty interesting - I was there 4 hours in total, including a 'sauna' haha! Had to lie in 42 degree C heat with goop on my arms and legs that showed up where I sweated. Had various breathing/BP/HR tests and an electrically stimulated sweat test. Also tilt table, but other than feeling like I was still moving up and forward for a couple of minutes even after the table had stopped, none of my symptoms happened. I was required to stand for 10 mins. I saw some tilt table tests go for 15 mins or even 30 mins, but to be honest 10 was enough lol!

Wait and see ;-)

Thanks for listening.

1 like

I have EDS, sjogrens and ankylosing spondylitis. EDS stuff came out of nowhere. E.g. never noticed my stretchy skin then all of a sudden I have really stretchy skin! All after birth of my son. I also developed raging neuropathies. Sjogrens is a leading cause of autonomic damage. This is where it gets confused as eds affects autonomics too.

Took me 4 years of countless appointments to get my diagnosis. I do not believe ultrasound is entirely accurate. I've spoken with others who have had that come back clear. It was lip biopsy only that confirmed mine xx

1 like

Thanks Joanna36

That's interesting re your diagnoses particularly EDS showing up later. From what I've read there are a number of overlapping symptoms between sjogren's and EDS aren't there. I suppose I am just going to have to toughen up and wait. I hope this 3rd rheumy is willing to stick with me longer than 1 or 2 appointments before getting bored with me! Even the immunologist gave up at 2nd appointment but he was lovely to offer to remain involved a bit longer to case manage things...seeing as I am paying lots for each appointment then why not lol! I am looking fwd to the second neurology appointment. I told him up front I want specialists that are willing to spend the time but he is a public doc so will have to adhere to public criteria for discharge...but at least he will refer me to a decent private neuro if needed. He was really great actually.

So patience is what I need. Why should I be so special as to find my diagnoses in less than 2 years lol! It will be 2 yrs in July...thanks for sharing your experiences. I like reading others experiences as it can be very reassuring or just plain fascinating! 😁


You may also like...