New to EDS and beginning my research after a recent visit to a cardiologist who, to my surprise, started to check my joints out. He discussed with me the link between hypermobility and the autonomic nervous system, which is what is apparently causing my troubles.
I'm awaiting the written confirmation to my GP, but he diagnosed me with 'Dysautonomia' with hypermobility, or something along those lines. Looking into this, it can certainly explain a lot of my many issues.
This has been a long journey to get this far.
The cardiologist didn't say 'EDS' to me but spoke about 'hypermobility' and the tests he did in the office mirror those I'm finding online for EDS... Are these terms interchangable?
I'm suffering a lot with 'POTS' like symptoms; general fatigue - especially the more I'm upright, exercise intolerance, brain fog/headaches, neck tissue pain on one side, trouble with bright lights, HR issues, sleep problems etc etc... the list goes on, and it's like each of the problems take turns in making themselves a priority. I'm sure my GP thinks I'm mental.
For the moment, until we can get more tests, the Cardiologist has suggested the following:
1. Stay well hydrated
2. Add more salt to the diet
3. Compression legwear
4. Recumbent exercises
All of these are super useful, but I'm still suffering a lot. Is anybody else in a similar position? Have you found any other things that help?
Also, is this likely to be lifelong or is there a chance I can improve or it go into 'remission' as such?
I'm so frustrated having to live in pain and limit my activity so much.
I'm very grateful for any thoughts or input ... It's helpful to just interact with people in a similar situation.
Best wishes all.
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Entwicklung
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Not everyone with symptomatic hypermobility will have EDS. There are 14 different types, and around 80% of the people with EDS have hypermobile EDS, but many more have hypermobile spectrum disorder (HSD). The criteria for hEDS is very strict.
Not everyone with EDS/HSD will have dysautonomia, and not everyone with dysautonomia will have EDS/HSD.
The recommendations the cardiologist gave are the right ones. We have had it drilled into us that we should cut salt out of our diet but it is actually hard sometimes to get enough salt into our diet. My son wears compression socks, and drinks two litres of water a day and it does help.
He is also on medication, which has helped with his heart rate but didn't help with symptoms so we are trying another medication now.
The good news is that often as we get older we sort of grow out of this. I know I don't get so dizzy when I stand up anymore as long as I drink lots of water.
I agree re the salt - I've always been a fan of salt and I can tell my body wants/craves it. It definitely helps with things.
Oh yes I can certainly see the distinction between the hypermobility disorders and dysautonomia. I'm vastly more interested in the dysautonomia issues as these are what cause me the most disabling problems. I do get joint pains but I can deliver with those at this level... It's the crippling fatigue, heart racing / palpitations and brain fog that I need to get some relief from. The cardiologist asked me about 'coat hanger' pain and I didn't. Realise what he meant and it finally clicked after a day out the other day... It was literally like I was getting strung up afterwards and through the night; my traps were so tight 👎 (Another clue my body has been trying to give me for such a long time that I've not interpreted correctly at all!).
An interesting part is that things wax and wain for me, no two days are the same. Do you find this? I can say right now that when it comes to a tilt table test it will entirely depend on the day/conditions as to what happens during that test and what the result is. I think hydration plays a key role here.
was this cardiologist at Hammersmith hospital by any chance?
I have hypermobile EDS / HSD and a problem with low blood pressure , fainting and tachycardia. A cardiologist at Hammersmith made the link. He also sent me to Guys hospital for a Mast cell check and it was confirmed that I also have genetic Systemic Mastocytosis. He explained that weak collegen in blood vessels causes blood pooling which causes low blood pressure and low blood supply to the brain . Then you get an adrenaline rush to correct this which in turn sets off reactions such ss anxiety and tachycardia.
The advice on compression salt and fluid was the same for me. I wear medical compression socks and on top nice compression sports tights which are more comfortable than medical compression tights. An nicer from my point of view because they come in colours.
I sympathise about the other symptoms - pain , exercise intolerance, brain fog etc etc.
very happy to discuss with you ways of managing this. If you in london i would be happy to meet for coffee
I am afraid these conditions don't miraculously go away but the more you understand the medical information the better you can manage. And you can (and often need to )educate your GP too .
Because my issue also involves my immune system ( EDSh and Mastocytosis occur together much more often than by chance) i also take antihystamines. But that is only relevant if you have a history of allergy and even anaphylaxis. Do you?
An expert physiotherapist for hyper-mobile issues is called Jason Parry . He is the lead physio at the hypermobility centre at UCL hospital but also has a private clinic in St Johns Wood. Very helpful.
Ah wow thanks for taking the time to reply Marcilhac , that's all very comforting to me if I'm honest.
I've not heard the link between these issues and the adrenalin rushes, so this is fascinating and really useful to me to understand... It sounds very logical. I always need to make sense of things and my brain is all the time looking for answers/solutions. I believe from what the cardiologist said to me that hypermobility and these other issues are also linked to autism. I assume he made that link when I appeared with a laptop full of my test results neatly presented in a multi page spreadsheet 🤣
It seems I'm a bit further north than you; the hospital was the Royal Albert in Wigan. It's good to know that there are multiple doctors out there with this deep knowledge; I can understand how many others just can't put the pieces of this complicated puzzle together. I was immediately impressed that within minutes he had me figured out. I've spent an innumerate number of hours trying to put this all together and never once considered a hypermobility link. MCAS was on my radar, as was POTS, but not ED or HSD.
The more I learn about all this, the more it's convincing me these are my issues. The hypermobility had never crossed my mind at all because it's not something you really explore at my age. As a kid I was super flexible, but many are... Not so much any more, or so I thought. I saw the Dr write down 6/9 which I now guess is the first part of the scoring system for the hED list. He asked me many of the same questions you see on the criteria list too. After some research into the vED type I'm a little concerned about this to be honest, as I have many of the physical features. Still, I'll try not to get ahead of myself as I haven't even seen the letter to my GP yet, so we'll wait and see.
I think it's likely that I'll be in a similar boat to you in terms of the mast cell issues... I'm quite reactive to dust, pet fur, pollen and some foods now. I haven't fully got a list of foods to avoid but bread is definitely a contender as it goes as far as to affect my breathing afterwards. Alcohol, which was fine previously, is a massive no-no now.
Ah thanks for the advice and yeah I've just bought some men's running 'tights' for want if a better word. They worked well on the compression front recently on a day out, but they made me too hot which wasn't helpful at the same time. Heat isn't great for me at the moment, and I can't seem to sweat at all... Do you have this issue? I read that some people sweat too much with all this, but I'm the opposite. My body seems to react better to the cold, but at the same time it feels horrible to me and I'm then freezing 🤣
Interesting what you say there about the collagen... I read about this also. I then of course checked my heels and there's bumps sticking out all over the place. These strange things you don't even notice and they're actually your body telling a story / giving clues all along.
Oh I won't lie, I've been living in hope that this will miraculously fix itself. Some days or part of days are good and I naively think I'm free, only to then go downhill rapidly. Can't remember my last full pain free day to be honest, which is a sad thing at this age. Took the kids out for a few hours recently for fun shopping trip because I was feeling 'ok'... Man did I pay for it afterwards; pain, sleepless night, HR way up and just totally exhausted the next day and beyond.
Anyway, yes I'd really appreciate any advice you have to offer on the improvements front; l'll take all the help I can get. I'll drop you a PM if that would be alright?
Thanks once again... Massively useful to speak with others in a similar boat.
Please do send a private message and i will then give you my email etc;
If you suspect a Mast Celll issue ( either mast cell activation or the genetic mutation Mastocytosis) you should probably get tested. Look at the UKMasto website or the USA equivalent.
If you have one of these conditions the triggers for activating your Mast Cells are listed as:
Getting too hot; Getting too cold; Getting stressed!!! ( difficult to avoid i know) ; Vigorous exercise; Alcohol ( not everyone reacts to it) Food colouring and perfumes; insect bites; Wasp venom ( can cause anaphylaxis so a big no no); some sufferers react very badly to Ibuprofen
TREATMENT and dealing with it…
( you really need a diagnosis before self medicating on antihystamines)
1. Avoid triggers
2. Daily doses of antihystamine type 1
3. Daily Antihistamine type 2 - if you have stomach/ digestion issues
4. Carry epipens at all times
5. My cardiologist recommends meditation and tai chi. Jason Parry EDSh physiotherapist also recommends Tai Chi. I find it very good for pain reduction.
i can send you links to the research papers which identify association between EDSh POTS , low blood pressure and allergic reactions. . Mainly research published in USA .
I am glad to know there is a well informed cardiologist in Wigan. I am in my 70s and the order of diagnoses was: 1 syncope and hypotension, Then post viral fatigue (mis diagnosis) Then Ten years later EDSh. Another 7 years or so heart fibrillation etc, and finally genetic mutation of Mast cells - probably causing the whole lot!
Informed physio has kept me mobile and knowing what is going on has made me far less anxious and enable me to reduce symptoms.
So if i can offer any support I will be happy to do so.
Wow that's quite a journey you've been on there - I'm glad it's finally all diagnosed but what a shame it's in reverse order. I'm hoping now I might avoid some major problems, as it often feels they're on the horizon.
Ah thanks so much - very interested in that info so I'll drop you a message! ⭐
I wouldn't worry about vEDS. Unless you have had arterial rupture at a young age, intestinal rupture in the absence of known diverticular disease or other bowel issues, uterine rupture during the third trimester of pregnancy in the absence of previous C-section and/or other severe vaginal tears, and have a family history of the disorder, arterial rupture or dissection in individuals under 40 years of age, unexplained colon rupture, or spontaneous pneumothorax in the presence of other features consistent with VEDS, then it is really unlikely that you have vEDS.
vEDS is very rare, hEDS/HSD is much more common. If you had vEDS you would probably know about it already.
Ah thank you, that is comforting to an extent as much of that doesn't ring a bell. I have had a collapsed lung around 10 years ago, but I was doing a lot of physical work at that point so I put it down to that. At the moment I worry about this rhs neck pain I have a lot. It's hard to explain but it feels like it's vein/artery related. I've also been getting a lot ofa kidney pain which has been this far, unexplained.
Still, i'm very hopeful vEDS isn't an issue... It would be very helpful to have it confirmed though. There's a genetic test for it from the info I'm finding.
If you have none of the symptoms then they won't give you the test. And as the woman in the video says, she is not a clinician. Have you had an aortic dissection?
If you have 6/9 on the Beighton scale, they it is more likely that you don't have vEDS. vEDS has the least amount of hypemobile joints.
And take with a pinch of salt what people from other countries say about getting genetic testing. It is generally not available in the UK.
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New :) 
Hi, I'm (potentially) new
vADS presentation vs hEDS, especially on darker skin tones
Feel like being ignored by Rheumatologist and GP not sure what to do next? 
