Invisible illnesses

What is EDS?

I know a couple of people with EDS and until a year or so ago I hadn’t heard of it. I’m now more aware that it’s out there, I’m even getting sent to a specialist to see if my slight hyper mobility is actually EDS, but I still have little idea about the details of this condition, so I thought I’d look into it and share what I’ve learnt.

First of all I discovered that there are a few conditions associated with hypermobility and EDS or Elhers-Danlos Syndrome is just one of them. JHS generally presents more frequently in women shown by the ability to over extend joints. It can also cause pain, fatigue, dislocations and can often be misdiagnosed as fibromyalgia or ME/CFS. EDS is not discerning and affects men and women to a similar degree and as it is a problem with the connective tissue this can also affect the internal organs causing problems with bladder, bowels and the nervous system. The severity of symptoms can vary dramatically and can affect daily living to a huge degree.

So symptoms include being able to over stretch the joints, put your hands flat on the floor without bending your knees for example, pain, fatigue, bruising and lax skin, IBS, breathing problems similar to asthma, hernias and prolapses, blackouts and low blood pressure and anxiety. Sounds fab doesn’t it! Also it’s confusing as Joint Hypermobility Syndrome (JHS) and EDS (common and vascular) can also overlap and include other hypermobility conditions! I’m a bit lost already!


“Ehlers-Danlos syndrome is a group of conditions that arise from genetic alterations in collagen. Collagens are proteins found throughout the body. There are a number of different types of collagen in the body, often found together in very particular combinations in different body tissues. We all make the same collagens, distributed throughout the body in the same way. The collagens give strength and support to, for example, skin, bone, blood vessels, the gut, and tissues in and around joints such as ligaments, tendons and cartilage. The production of each type of collagen is genetically determined. Alterations to the genes that are responsible for either making collagen or allowing it to function properly can result in weaker or more fragile and stretchy tissues throughout the body. As a consequence of this certain physical findings and complications arise. It is the recognition of these patterns of physical signs and the identification of specific gene alterations that allow clinicians to separate out the different types of EDS.” From http://hypermobility.org/help-advice/hypermobility-syndromes/what-is-eds/

There are quite a few different types, and can be diagnosed in a number of different ways including gene testing, biopsies and imaging tests.

The ways to manage the condition/s are also varied and focus on treating the symptoms as there is currently no cure, no way of altering the genes or assisting the body to create collagen correctly, so managing the pain, fatigue, dislocations, skin problems, internal problems are all dealt with separately. Looking after your skin, pacing and pain management seem to be the big ones. Then you need to think about what’s going on inside and deal with any bowel/bladder/blood pressure issues as well. All in all its a complex condition that affects numerous parts of the body and makes life challenging to say the least for people with a hypermobility syndrome.

The link with anxiety and depression is really interesting for me and this quote explains why hypermobility and psychiatric conditions are linked

“‘The body’s tendency to overreact to stresses by making too much adrenaline can lead others to think that hypermobile people are “too sensitive,” “irritable,” or “anxious.” Patients themselves may notice this, saying, “I’ve always overreacted to little things. I can’t help it.” It is very important to recognise two things about this phenomenon. First, it is a physical reaction, so that counseling usually will not be effective in treating this type of anxiety. Similarly, adrenaline highs and lows may be mistaken for the mood fluctuations of bipolar disorder, but mood-stabilizing medications usually are not indicated. When medication is required, beta blockers, which block adrenaline, may be as effective with fewer side effects than SSRI’s like Prozac and Lexapro or benzodiazepines like Xanax and Valium. Second, while a feeling of anxiety can be produced by emotional stress, it is just as likely that such symptoms have a physical cause, most often fatigue, pain, or dehydration, and less commonly by a drop in blood sugar or blood pressure. Not surprisingly, researchers have found that anxiety and panic disorder are more common in hypermobile people.’ (Quote: Dr A Pocinki MD, PLLC)”

An excess of adrenaline certainly would have an affect on how you react and relate to people and I have personally found that people with Hypermobility conditions have a tendency towards excess mental energy that comes across as being a bit “hyper” sometimes, I know I can see this in myself!

Researching any condition can lead you to see symptoms everywhere and going “down the rabbit hole” of online medical research is not something that I do often, but I’ve learnt a few things and will be interested to speak to the specialist when I go to see them to see if I do have some level of hypermobility and if that affects my other conditions. I hope you’ve learnt something and if any of my EDS friends want to comment or put me right on anything then please do! Also if you’d like me to do a quick research into any other invisible illnesses then let me know and I’ll add them to my list.

Vic xx

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5 thoughts on “What is EDS?

  1. That is amazing Vic – thank you! I don’t think I have ever before seen, or read anything on EDS which is as comprehensive, accurate and yet completely user-friendly. Even though I do have it!
    Thank you! A lot!
    It is very helpful to have so much detail all in one place – I do find it hard to explain to people expecially when it is one of those very invisible conditions which affects every bit of your body in one way or another!
    You’re amazing my friend!

    Liked by 1 person

  2. After getting my EDS diagnosed, it was almost like when you get a new car and suddenly you see that car everywhere you go! I’ve met 5 people who score >5 on the Beighton Scale… I just find it unsettling so many physicians are still in the dark on exactly how prevalent this condition is… Nice comprehensive article! I really enjoyed it!

    Liked by 1 person

    1. Thanks! As I don’t have it myself I was worried about what people who understand the condition better would think, so nice to know I’ve done ok with it! You’re right about finding people as soon as you know you have something, I’ve been amazed at how many people have invisible conditions and hide them who are telling me about them since I started writing this and talking about my own conditions. Always nice to know you’re not the only one ☺️ xx

      Like

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