EDS and me


My life with EDS….

I know I post a lot on twitter and Facebook to try and raise awareness – but I’ve decided to write down my journey, good, bad, and ugly – so thank you so much if you have taken time to read this :).

EhlersDanlos syndromes (EDS) are a group of genetic connective tissue disorders. Symptoms may include loose joints, joint pain, stretchy skin, and abnormal scar formation. It often takes many many years for a formal diagnosis.

As I have hEds – I have decided to list some of the weird and wonderful things that come along with it..

People with hEDS may have:

• joint hypermobility

• loose, unstable joints that dislocate easily

joint pain and clicking joints

• extreme tiredness (fatigue)

• skin that bruises easily

• digestive problems, such as heartburn and constipation

dizziness and an increased heart rate after standing up

• problems with internal organs, such as mitral valve prolapse or organ prolapse

• problems with bladder control (stress incontinence)

• Pregnancy complications

• Slow gut movement

There’s many more – but they are the main ones!

I was strangely diagnosed after an eye test – they found white blood cells in the back of my eye (you can get sensory problems too, eyes, ears etc) and sent me to a rheumatologist. I was 28 when I was diagnosed.

At the time, I will be honest I had never heard of it and I was slightly scared. But I carried on going on my long walks – my body would always ache after but I thought that was just from walking too far. It turns out it was the EDS. I used to come in and get straight in a shower or shabath (sit down shower haha).

It’s only when you sit back and research it, that pieces of your childhood jigsaw start to piece together & you realise you weren’t in fact an unlucky clumsy child… and then it got worse.

I was walking 6 miles a day at work, and getting progressively worse but kept going , until one day my body wouldn’t physically let me any more. I couldn’t move, my knee had displaced and I ended up in a&e. (I don’t bother going now, we have putting them back in to a fine art ha)

But it’s the inward bits that people don’t see, which is why I’m trying to share my journey with people.

The pain is constant, it is draining, but then you don’t sleep because of painsomnia. A viscous circle.

People with EDS don’t tend to absorb medication and even certain foods too well either – I have been on tramadol and had no relief. The same for morphine.

I have gut issues, I have bladder incontinence for which I get Botox (designer bladder!) and yes, I have soiled myself when I have lost control of my bottom muscles.

My partner has been an absolute godsend helping me; bathe, change,do my hair, push me in my chair, take me on days out to places I like – basically everything.

I have constant crutches and braces on, and just the other day was sat on the sofa and my shoulder just popped out. Just like that, I wasn’t even moving.

This is the difficulty of EDS because it has so many different aspects under the surface people can’t see. I’m stubborn, I won’t refer to myself as disabled, instead using the term differently abled. I understand some people don’t like this term – but it works for me.

I still try and do what I used to, just with adaptations. I have my mobility scooter which gives me more freedom (I haven’t driven my car since February this year). And I have my crutches and chair. The only problem with crutches is 1. They make you even MORE tired & 2. They risk my shoulders coming back out.

I have at least one dislocation a day, and my right knee is usually the culprit.
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I have POTS – Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down.

My skin often turns into what I call corned beef skin. Mottled and just not nice to look at really – but I’m not a vain person so I just get through it with humour saying my EDS skin is back. This links in with MCAS. Mast cell activation syndrome.

Mast cell activation syndrome (MCAS) is one type of mast cell activation disorder (MCAD), and is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks – this can especially happen after bathing!

I Have bladder and gut issues, and need to sit on a towel in the passenger side of the car because once an EDS’er needs to go there’s very little warning. I’ve lost count of the number of times I have wet myself – but I’m no longer embarrassed.

I was diagnosed with a secondary condition, fibromyalgia with all of its tender points too on top of the EDS.

It’s so difficult to try and explain it to people without keeping them from their day (or two!)

But this is my story. This is my life. Some days I will be okay and have okay days. Some days I cannot get out of bed.

Sometimes my gut works properly but usually not.

Yes, I have pooed myself.

Yes, I wet myself.

Yes, I get frustrated at times that I’m not as active as I was.

But one thing I’ve come to realise is that I have it. It’s not going away… so I just crack on with whatever I can and try and keep my mindset positive.

I wet myself at least 3 times a week (I’m waiting for my next lot of Botox)

I have had an ectopic pregnancy and a miscarriage which can be both linked to EDS.

I have endometriosis which again is linked to EDS.

I have hearing problems that have been there since I was a child.

I have the archetypical VERY skinny wrists but very large hands in comparison.

I can’t control my body temperature which isn’t great, especially in a hot shower or shabath.

I have the ‘long face’ a lot of people with EDS have. In the family we are all animals and I’m the horse haha!

Yes my joints pop out regular, or even sublux (not a full dislocation).

Yes I struggle to live the life I once had, walking for fun and I miss out on so many social things because it really is one day at a time.

I can’t make concrete plans with you, because I can’t promise on that day will be okay.

My hands and feet regularly turn purple and like blocks of ice because of my poor circulation.

I love music so I still try and get to my concerts – with my partner pushing me in my wheelchair (they often don’t allow mobility scooters).

But you know what? This is my life now, and I do my hardest to do the things I could before – just adapted.

With it being connective tissue, collagen and joints, it literally affects your entire body, as your body is made up of collagen connective tissues and bones (joints). All of my ligaments are lax, joints loose and unstable, internal organs have collagen around them but not supporting them well – and that’s just a few things.

I just wanted to try and write this to keep raising awareness (and I’m sure I’ve forgotten loads, so I will keep adding to it) and not for any sympathy please. If you think this could help anybody then please feel free to show them. If you just wanted to learn more about it, then thank you from the bottom of my heart.

If you imagine being filled with concrete at the beginning of the day – that’s the best way I can describe how it feels & the pain.

There aren’t may surgeries they can do, as with the joints and ligaments being so lax to begin with, putting a false ligament or tendon in won’t strengthen the others.

I am lucky. I have my group of friends and my family. I have my partner and his two amazing children who understand completely and they are 5 and 8.

It took me a long time to realise I had to accept the changes to my life but slowly but surely I’m getting there!

Thank you once again for reading and I hope you found it informative (or boring, either or, haha)

And if you have any questions please don’t hesitate to get in touch with me, either via here or Twitter @lala_cox

Keep on keeping on zebras, and anyone else who suffers from a long term degenerative disease. You’ve got this. I promise.

Thank you again for reading. More info can be found here – https://www.ehlers-danlos.com

Lauri x

NOTE: none of the above advice is intended to substitute medical experts opinions. Please always see your doctor, specialist, PCP, or physio if you have any problems. Thank you.

Written by and shared on behalf of Lauri Cox