Ehlers Danlos Syndrome and how it affects me

I first published this post in May 2014 for Ehlers Danlos awareness month, as it’s that time again I thought I would share for those new to my blog.

As May is Ehlers Danlos Syndrome Awareness month I thought I would share with you how my bendy body affects me and take some photographs to show you how bendy I am. Now I am well aware that as an Edser I am not supposed to perform “Party Tricks” every doctor I see tells me that after they’ve asked me to show them! The moves I have photographed cause me no pain – I wouldn’t be that stupid to suffer so much for my art!

For those of you unaware of what Ehlers Danlos syndrome is or that are new to it I am going to give you a brief and basic overview. EDS is an inherited connective tissue disorder, affecting the collagen protein in the body. Connective tissue is the “glue” that holds the body together, it connects tendons and muscles to the bones and holds organs in place. Collagen is what makes this glue and in EDS, its a bit defective. Our connective tissue is super stretchy and lax so it means that our joints aren’t held in place properly. Our joints have an unusual range of motion – so in normal people your joints will only move to a certain point. In EDS ours move to that point and beyond – the photo below is of my fingers which are hypermobile.

If you don’t have EDS you will recognise that my fingers should not be able to move this far. I have seen a video of a lady with EDS pull her fingers so far back that they touch her wrist. Thankfully mine don’t move that much.

It is important to remember that EDS is a syndrome ( syndrome means a collection of symptoms) so it affects people differently. You may know someone who is double jointed or extremely flexible ( and probably not diagnosed with EDS) they may when having a look at the beighton diagnostic criteria clearly have EDS but have no pain or any other of the associated symptoms. Where as I have constant pain and joints that like to sublux ( partially dislocate) or dislocate on a daily basis. Also some people find that they have joints that are very unstable (sublux or dislocate) and other joints that are fine and actually normal. My elbows joints are normal and not hypermobile and although I can do this (see photo below) with my thumbs the rest of my thumb joint is stable.

My doctors have classed my EDS as type 3 or Hypermobility, ( there are a few different types of EDS) I was diagnosed by a rheumatologist who I paid to see privately. Getting a diagnosis was one of the few things that my GP and I have ever disagreed on, he felt I didn’t need it I said that I did. Since I have got the diagnosis it has changed the management of my pain, my dental treatment and provided some much needed answers as to why I have had pain from such a long age. I was still being told I had growing pains at 26 when I visited a gp for my leg pain! You maybe wondering why my dental treatment changed after my diagnosis well with EDS we are more prone to periodontal disease (gum disease) and also we have a problem with all local anaesthetics. For some of us local anaesthetics don’t work at all for others, like me we burn through locals really quickly. My dentist also has to give me a local anaesthetic that doesn’t contain adrenaline. Due to my autonomic dysfunction adrenaline causes me to have tachycardia and that in turn can cause me to faint when getting up from the dentists chair – which I have done.

The worst area of my body affected is my spine which is very hypermobile from the back of my skull to my coccyx (tailbone) those little vertebrae rarely like to stay in place. My neck is hypermobile and I have what’s known as “owl neck” so I can move it not all the way around but too far on both sides. I also found out by chatting to someone on twitter that doing (see photo below) is not normal. You see thats the thing with EDS we have no idea what the normal range of motion is for a body part as we have never experienced normal.

I have four discs at the base of my back that I can’t even touch with my fingers without me flying through the air. I never have a day without some sort of back issue – muscles going into spasm, discs being naughty by locking up so I can’t stand up you name it my back can do it. You may have heard me mention before how I have to go to bed really early its because by around 5pm I am struggling to hold my head up and my back is starting to resemble the letter ‘C’. My muscles work hard all day trying to support me and by 5pm they are worn out and throw in the towel.

Although it may seem like fun that I can do all these things and I have the bonus of looking young for my age (the only good thing EDS has ever given me) life with EDS is not fine and dandy. EDS produces fatigue as our muscles have to work around 5 times harder than a normal persons every time we move. EDS is almost certainly the cause for my autonomic dysfunction its estimated around 78% of people with Ehlers Danlos Syndrome have autonomic nervous system issues.

There are currently no genetic tests for EDS Hypermobility ( other forms of EDS have genetic tests) and no cure for any type Ehlers Danlos Syndrome only treatment which consists of pain relief, physical therapy and bracing joints.

Throughout May I will be blogging about EDS to explain what its like to live with this condition.

Useful links

NHS CHoices explaining EDS and the types of EDS

Ehlers Danlos Support UK UK Charity for EDS patients and produces an excellent magazine called Fragile Links

Hypermobility / EDS and the other issues it can cause in the body– HMSA Charity (HyperMobility Syndrome Association)

Beighton Scale from the HMSA website

 

While I was getting my husband to take the pictures the dogs tried to join in. This is Mollie trying to give me a kiss!

 

 

This is me giving up as all the dogs tried to join in!

 Sunday 4th May 2014

I am very sorry this post was supposed to be published tomorrow. Unfortunately I am still trying to get to grips with WordPress and scheduling posts. My apologies  Rachel x

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2 thoughts on “Ehlers Danlos Syndrome and how it affects me

  1. I can do the same thing with my neck! It’s taken a long time to realize that all the things I thought were normal that I could do with my body are actually not normal.
    Great post.
    The young looking side effect is interesting.
    I actually started to get weirded out over the last few years because I still look very young even though Im in my late 30s.
    Now I keep reading how this is an EDS side effect.

    Like

    • Thanks for taking the time to read my blog and leave a comment its always gratefully received!

      Now I am in my forties I am happy that EDS makes me look younger! Especially when I can see my old classmates photographs on social networking sites and have my husband say “you look at least 10 years younger than them”. Its the only positive from this condition!

      Thanks x

      Like

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