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 has confirmed generalised joint hypermobility at our initial meeting, given my medical history we’re having a more extensive examination next month. I think it’s only after that’s done that GP may agree to genetic testing.
In the meantime, I just read about vascular EDS. Not self diagnosing or anything, but one of the things mentioned is early onset varicose veins. My mum has spider veins on her face, I’ve had them on my calves and thighs since my 20s. However when it comes to non-varicose veins that are still visible: does anyone know what extent they would be visible to? My mum has fairer skin, I have more olive skin, I can’t find any sites or images showing how ‘translucent skin/visible veins’ presents other than for fair people. I’m thinking underside of forearms etc.
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Hello. It's a bit hard to answer as this part of a wider picture or to explain very visible to slightly visible and how skin colour and tone varies in words online - in a very simple way if you can see them they are visible. It sounds like they aren't? So you don't have that present. You can see them on olive skin (as you mention). Varicose are different from spider veins and about the involvement and therefore presentation. There are issues with seeing veins on darker skin, but then you can see other presentations such as the way scars are present, have healed (or not) and stretch marks. Do you bruise easily, cut easily, heal easily and have loose, tight or stretchy skin? Dental issues? All those might be clues. Ask your GP if you are concerned, ask them to coordinate and be the hub they are supposed to be.
Then the involvement of gastrointestinal issues, pain, cardiopulmonary system effects, dislocations, mobility and other factors. It's multisystemic.
My advice is not to guess and try to be as patient as you can be. I was not offered any genetic testing and I'm in my 40s and still waiting for proper coordinated care. My sister died recently and it's still unexplained so it may or not be EDS involvement and her children have been given ECGs to check. Not to put you off, but this is dealt with fairly differently in different areas, slowly, and even after diagnosis things like treatment may not fit into place. I've had diagnosis of EDS confirmed multiple times by multiple specialities and been at UCLH and RNOH. That took 25 years bouncing around different hospital departments. And physios, gastro, surgical, mental health, psychology, pain, dermatology etc.
You can have some symptoms and not others, some only very slight and others more severe, and only marginal issues and others are much more affected.
If you are not experiencing issues and symptoms try not to worry about other ones you might possibly have and enjoy what you have as you can.
Thank you for replying, I’m so sorry for the loss of your sister. Hoping you get answers soon.
I can see my veins on forearms etc, they just don’t look like the pictures online because they’re more green and my skin is darker. I thought everyone could see their veins so wanted an idea of the baseline.
I have multiple subluxations, joint pain, dental issues (which could also be my thyroid), fertility issues, gastric issues, autism, bruises up my legs, spider veins up my legs, my skin chafes & blisters so easily, low blood pressure, mild heart murmur, dizzy spells and occasional vertigo. Skin soft but not excessively stretchy, stretch marks, no idea really about healing fast or slow because I don’t know how other people heal.
At the moment it’s curiosity rather than concern, I’ve just learned that I can’t rely on GPs to always have the capacity to follow through with things.
Thank you. I think what I'm trying to emphasise is that once you know 'the answer' it may not help you, which is why getting a genetic test may not help you much. Most NHS care is now focused on addressing the symptoms and managing any risk or complications.
By dental issues I mean high palate and overcrowding, that kind of thing.
I'm not sure it's that helpful to compare yourself to images online. If you have very fragile skin it will appear differently.
You do know how you heal - if a wound heals and the way it heals. If a scar is left and what type (does it heal, heal flat, leave a raised surface etc). If you have stitches and the wound pops open you would know about that. I had that happen multiple times and now need to warn my team before any surgery.
I wouldn't rely on checking symptoms online past a certain point, more managing those you know you have.
0101 gave you some very sound advice. Live your best life with gratitude and hope. I wasn’t diagnosis in the US until I was around 60. My three kids were then evaluated and also diagnosed wit hEDS by a clinical geneticist M.D. PhD. Though all of us have some overlapping symptoms with other types of EDS, only one child had sever enough symptoms (very high arched palate, very crowded teeth, one absent permanent tooth, chronic migraines, dizziness, and extremely stretchy velvety skin) to warrant genetic testing for vEDS. It proved negative for vEDS but revealed a very rare collagen genetic variance. A full blood and cardiac work up, dexa bone scan, and POTS testing were also done. More testing showed the variance was inherited from his father who then was evaluated and diagnosed with ‘borderline hEDS’.
Like you, I noticed my first varicose vein very early (age 14) with spider veins both on one calf only. Plus mottled skin with a blueish to purplish cast in a jigsaw like pattern. All indicate circulatory problems. The growing zebra and cardiovascular list goes on but I absolutely do not have vEDS.
I am very fair but the three of my family are much darker and tan easily. One of those three had a calf skin condition which was unidentifiable by three physicians and lab experts even with a biopsy but thought most likely to be vasculitis.
It’s important to note that even though my family shares EDS, we all have different and/or overlapping symptoms with at least kEDS, cEDS, and vEDS due to our individual unique genetic profiles.
I’ve found it helpful to myself, family, and physicians to share my own research with my medical experts, all with varying levels of specific EDS information and treatment expertise. This collegial approach has been overall well received and helpful. But you can’t let it overwhelm your thoughts and life. Basically we all live pretty normal lives long into our golden years. Good luck to you!
thank you! I’m genuinely not hugely concerned right now but I like information and now know it’s needed when dealing with doctors sometimes.
I’ve got a complex medical history but it was only after prodding from a (private) therapist that I got blood tests which showed hypothyroidism, B12 deficiency and iron deficiency. I then started to pay more attention myself and advocate, found out I’m autistic & with ADHD. I’ve pushed again and now under care of NHS physio for all the dislocations. All this stuff has caused me problems all my life (along with other things) but has either been treated as individual symptoms in isolation or seen as just a mental failing. Also, to be honest, when you don’t know any different and your parents probably have the same conditions you’ve not got much way of telling that’s something is wrong - it’s normalised. I’ve also learned that even if diagnosis doesn’t result in treatment - health professionals only pay attention to what other doctors say, it needs to have an official stamp on it!
I never knew about the oral thing. Both me and my mum still have some baby teeth as no adult teeth came through. I had my first adult tooth extraction aged 12 and have had 5 or 6 more since then. Gums always bleed. Interesting, thanks!
You've had lots of excellent advice . I will just add that various EDS types and some other Hypermobility conditions can cause easy bruising , slow healing and translucent skin with visible veins from an early age not just vascular types. Non life threatening Cardiovascular and Circulatory symptoms are also common often with hEDS especially if you have trouble with low blood pressure or some level of digestive issues or Autonomic symptoms.
Vascular EDS is not common. Periodontal EDS can also cause more dental issues and some of the less common characteristics like raised veins. It took me years to get diagnosed and finally get an appointment for family genetics testing which when it is done may find other causes for the vein issues not just ones linked to my EDS.
Good to read this. I had a stay in hospital recently and was dreading having to explain that my very low blood pressure is very normal for me, so they didn't need to check so often and yes I couldn't physically drink more water. I was being woken every hour at one point til I managed to convince the HCA I was ok and have had the consultant write notes on the front of my file to say similar before.
Rather weirdly I had a dermatology appointment this week with a new consultant and mentioned that I also had EDS. He stated very confidently that EDS 'only affects the joints' and 'there are three types you see'. I was a bit surprised to be honest.
It's terrifying how ill informed many doctors and specialists are about EDS and other illnesses like P.O.T.S and Fibro. Sometimes it is just lack of time to research or train on certain things , which I can understand , and in those cases if you are polite but able to give information to them they usually appreciate it . It's the times when you know that this isn't just training but their resistance to research or the denial and personal opinion getting in the way of good medical care that is most worrying.
My issue has always been the ones that say , " Pull your cheek " , then the expect that your face should always be as extreme to stretch as the photos on YouTube or Elastic girl. If it only stretches an inch or more they'd stop there and not check anything else. As apparently to many Rheumatologists it's the other way around , I may have lots of the stretch mark scarring in weird places , stretchy skin including the bottom of my feet , and skin the peels off , constant bruises and grazes but apparently if I can't touch my eye with my cheek skin ( yes , someone asked that ) then it can't be EDS!
Yes it is! It's their CPD though. They need to keep up to date and this is now as recent as twenty years ago in the state of subject knowledge. I think I said confidently and fairly instinctively quickly oh I thought it was to do with any connective tissue and that it has implications for other organs depending on more than three types and that's what they said at RNOH and UCLH (who I knew he might respect more than me) and left it at that. I'm fairly bad at allowing arrogant people to make stuff up when they're wrong. We can all be corrected if we get things wrong. But that statement of fact which is made so confidently and is obviously wrong made me a little rattled. The excellent clinicians who did a good history always asked about skin issues and I have all of them. They've said in other appointments they can tell the moment I walked (or wheeled) into the room and my height and limb length. The good ones never examine me roughly or ask me to overextend and go 'ooooh' or giggle and say 'wow' yes you are. I have the confidence to refuse now. We have the diagnosis and multiple consultants and tests - check my records please.
I have no obvious stretchy facial skin but they love to comment on how soft my skin is and young looking like I'm an alien. I know some of them are like children getting vicarious thrills from pulling and pushing us about. That's not best practice and can be done with care when needed. I've had less invasive intimate exams! I went through enough prodding before seeing good, experienced and knowledgeable staff. One young researcher had it herself and our appointment was a world from any others - so relaxed and respectful. I can't believe I actually rolled down my socks in this last appointment to say, see here the skin peels off with any slight friction or contact and he did a shocked face. He then seemed to agree I might have a point. Then he said as I had no active issues he can't diagnose. As in no open bleeding wounds! Then he said my skin was a funny colour. So I changed tack and thought I'd just get the prescription and treatment as directed by a previous good consultant, remain polite and get out of there. I saw doctors like him who prescribed the wrong topical meds and with the wrong diagnoses, treatment and adamant guesses for the first 30+ years of my life. That annoys the good ones as much as us!
Why be so arrogant to say something and pooh pooh my patient history as irrelevant. I stated the scarring and other skin involvement and he looked a bit stunned. I wasn't going to show him my whole body and that wasn't needed to 'prove' to him or even detail other issues. Seeing as I was there to show him skin integrity it was a bit odd and he was guessing at maybe dermatitis and maybe eczema and maybe...so I said oh your colleague confirmed X in 2008 with allergy testing and the notes should be on your screen. Then EDS confirmed in 2016. He then faffed with a letter in 2016 from a neurologist which was a misdiagnosis and a bit of a red herring and later confirmed as an error. He read no other notes and said he couldn't. Hmm. I can remain calm when I know what's unfolding and people are unprofessional and snooker themselves.
This is the man who'd noted down that he'd previously discharged me, sending a letter for DNA and showed me his screen with 'phoned patient no answer'. No voicemail and no missed call on that day led me to doubt that was done. When I'd received the one line abrupt letter from this doctor I'd never seen but discharging me I had enough and he was unaware I'd emailed PALS as I was already a 'longest waiter' and the department had already rearranged a further five times with another three doctors before that and this has been rolling on since last September with their booking team having made repeated booking errors. So now nearly a two year wait. The head of the department had called me personally to apologise and rebook. We had a long chat. They'd funnily enough booked two of us to see another doctor at the same appointment time (who called in sick) so I'd emailed PALS to alert them as I sat waiting to see him that someone had made yet another error. They put patients down as DNA for the wrong appointments then discharge you back off their list and I heard staff doing this as I waited. I also heard reception saying that's not us it's bookings you have to phone this other number.
I asked what his name was as I got up to leave and recognised the name and mentioned that it was him who DNAd me without contacting me to find out what bookings were up to. He denied writing the letter, so I said cheerily, that's funny as you signed it and I received it. I then checked it was him who'd left the country for the reason of 'family emergency' then he looked really worried, then said oh we're short staffed and I said oh yes, Dr X is on maternity leave still. He was very flustered then and said how do you know all this you're just a patient...
When I finally got myself , and my daughter the proper assessment, I printed off the info and classification form from the EDS UK website ,,and said," look ,can someone finally do this properly". We'd got a new GP , whom was actually competent and had proved willingness to listen , or use, information happily from a patient. It included the actual measurements for skin stretch which are nominal in comparison to what the Consultants had asked me to do . Both my daughter and myself were in the Classic and Classic like bracket and then the GP was the one that finally organised the Genetics testing as I also have a more unusual form of Dysautonomia. I'd spent years asking each Consultant, in each specialism, including Rheumatology, to send me or my family for testing , and to do the proper clinic assessment and they all just seemed too scared to do it and passed the buck ( mostly I feel because they don't realise how easy the tests are because they haven't received that training).
You can't get to an NHS Rheumatologist in my area for EDS or Fibro assessment it's in the guidelines now that they can refuse appointments for this so if my GP hadn't finally listened and done it properly we wouldn't be were we are now.
I'd been treated as a Mental Health issue patient with poor dental hygiene for years by various dentists and dental consultants because my story of poor reaction to anaesthetic giving me a particularly bad treatment at a dentist and then TN was always greeted with a raised eyebrow! It's awful being treated like you don't care for your teeth , especially as a child, when you do . Most of my teeth broke from movement and I have a rare issue called Recurrent Ampthous Stomatitis Syndrome ( very nasty ulcers) because of the EDS.
I spent the tiny sum of money after my diagnosis to get the medical alert card for Classic EDS to wear to appointment now, available from EDS UK. It points out the anaesthetic issue on it as well as need for care and illness description. It's such a lifeline , not just when you have an emergency and may not be able to explain , but also because the professionals , of all levels , are all more willing to believe the guidance on a tiny card than they have ever been when I explain it myself.
I spent years learning to do my research , arm myself with the fact forms, a good symptom diary and photos on my tablet to show them easily and make appointments easier , so to be able to finally get somewhere when I may have been asymptomatic when finally getting to an appointment, or , when obviously having issues that don't show up in blood tests.
I've become practised in being polite , calm sounding , positive but firm , actually thinking about the usual comments of resistance I will get before an appointment and having the perfect practical and sensible answer for them ready .
But in reality , it shouldn't take most of your life to find to get diagnosed and years of learning enough that you should get a medical degree yourself to be treated properly.
The only reason I think I didn't give up was that I had children and knew the same was coming for them because of the symptoms they showed and didn't want them to go through the years of struggle I did. It's such a stupid system though , you can get an easier diagnosis if you have a direct relative whom already has a EDS diagnosis but managing to get the first person a diagnosis is virtually impossible because no one in your family has had the diagnosis yet!
You might want to print off the 13 types of EDS list for your unread doctors to see. Yes , granted 90% of the EDS sufferers may have the top 3 types but there are many that don't. And , unlike as many of my Consultant stated to get out of properly checking my EDS status , being diagnosed for Generalized Joint Hypermobility Disorder is not enough as , unlike their comments , JHS and EDS are not the same thing , that is also completely incorrect.
I have great , more discreet photos of my breast tissue , under arms , thighs and back for papyrus stretch marks so I don't have to undress. Weird wounds , ulcers , bruising , skin peels and huge swollen edema from injection sites , all gets photos and I got someone to take photos and a video of me doing all the Beighton and Brighton test moves so I would always have proof of my rating without having to do it on a clinic day. As , sometimes , the neuro symptoms mean I can't get my body to do what my brain is telling it too. My finger flexibility photos are my personal favourites as I can contort each finger crossing each with the others, with the thumb at the back of my hand , it causes the doctors a look of horror . It's a bit like getting my own back a little !
this is such great advice, thank you and well done on your perseverance to diagnosis! I’m going to take some photos this weekend and go through the symptoms, especially the dental stuff. I wish I had pics of my skin peeling but I’m so conscious of it now all my clothes are specifically to avoid chafing! Take care x
Oh wow, what a reply! I can't take it all in, so will reread. I can already see some very familiar things. How can so many of us cycle through and round like this. I feel quite teary. Thank you. This forum is so good, we can see we're not going utterly nuts!
hi - just to say thank you again. I had a tricky meeting with a different doctor who was deeply sceptical. I went borderline non-verbal as I was so thrown, but after your advice had brought with me photos of me doing every beighton test movement, my heel papules, steinberg & walker signs, my narrow palate & tooth loss, stretch marks, veins, hair, eyes + a written list of all other issues.
Oh that's brilliant I hope you get what you need.Keep those photos and your lists for the Consultation too , just because they are specialists doesn't always mean they are more well informed or less sceptical than a GP.
And of course it stops the brain fog getting in your way .
hi! The rheumatologist diagnosed me with hEDS pretty much instantly. I showed him the photos too and there wasn’t even a question. So thank you again! He wasn’t particularly interested in discussing anything auto immune or genetic testing related (my psychiatrist suggested MAST cell issues because I have random allergic reactions) because he said if it was cEDS I would have been diagnosed young, which I’m a bit sceptical about but fine. At least now I have evidence for dentists & doctors that I’m not making up the joint pain, fatigue, anaesthetic resistance etc! Xx
Brilliant!Yes , you're right to be sceptical about the opinion that you would have been diagnosed young with any EDS type other than Hypermobile, I was 48 before anyone was willing to check and would then say EDS and Joint Hypermobility Disorder are the same so you don't need it assessing and 50 before my Classic Like Diagnosis, it wasn't that the signs weren't there from birth , just that nobody had joined the dots and properly tested me , which was what caused me so many misdiagnosis and bad experiences with sceptical doctors and dentists all along.
Having EDS on the medical history is the most important thing , but if you feel you are having signs and symptoms of other less common EDS types , or issues with your heart and chest it is worth requesting extra checks and genetics assessment. You can always request your ANA and other standard blood tests for autoinflammatory or autoimmune issues at any point if you have symptoms which could be linked to them.
If you are in the UK , there is very little knowledge or help for Mast Cell issues anyway. You can take self care strategies to help improve pain , fatigue , inflammation or other symptoms that can be linked to Mast Cell activity linked to your EDS or other illnesses.
Vitamin supplementation , using natural products , improving your breathing and getting some fresh air and reducing stress both physical and mental and for some a daily antihistamine can make a difference to the severity of Mast Cell related symptoms which are occurring because of another illness rather than Primary Mast Cell Disorders.
It is worth requesting your Iron / Ferritin , Folates,Vitamin D and B 12 are tested to give you a baseline of your nutritional levels now , pointing out that you are getting the results to help you create the right preventative self care to improve your symptoms as it is common to suffer with deficiencies in these with EDS and other chronic health issues which add to the pain , fatigue and injuries when you can't manage to keep active. Request the results as they will say they are normal even if they are low or near borderline , which is when you could do with knowing the information to prevent the Deficiency and the increase in symptoms from it.
I'd definitely get yourself a Hypermobility EDS Alert Card and lanyard to wear to all appointments from EDS UK too. It's the best money I have spent. Wear it to all appointments , official meetings , work or public spaces . It's ridiculous but medical professionals and people in general will be more believing of your needs when they see a little bit of card on a string than they ever are when you the patient just tell them what you have and what you need.
Good tip on the EDS card, I totally recognise what you’re saying - annoying but objectively fascinating how having something written down gives it more weight than if you just say it. Even the document I put together myself for the hEDS diagnosis got an immediate reaction stronger than my verbal explanation & in-person demo.
I already receive B12 injections every 12 weeks from GP and supplement with ferrous fumarate, vitamin D & others. I used to take daily antihistamines but, since taking levothyroxine, my reactions to animals & pollen have reduced so it’s now the random acute reactions. But I guess it could also be having an effect on fatigue levels/slightly less obvious impacts. My ESR & CRP are both slightly elevated but have never been consistently tested.
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EDS? Where do I go to get diagnosed? PS I'm new to this forum. 
Finally got some answers 
Afraid of vEDs
Specialist EDS Clinic appointment booked