Ehlers Danlos Syndrome

Hypersensitive

by Veronica on April 27, 2009

in Ehlers Danlos Syndrome

You know what a diagnosis after so long gives you? It gives you a hyper-awareness of your body and what you are actually feeling. You start to pay attention to what your body is telling you and actually listen to it.

Which, you know, is great in theory. Unfortunately it means that instead of brushing off any and all pain, I am (stupidly) paying attention to it now.

Cue thoughts like this:

‘Why is my ankle hurting? Hang on, I’ll just stretch it out and OWOWWWW *click* shit. Wait, that’s why my ankle hurts. That bone flicks out. Heh. Who knew?’

Apparently whilst paying attention, I realise just how many bones sublux [I learned a new word, isn’t it pretty? I used to call it clickiness.] during the course of my day. My knee for example flicks to *almost* out quite often. It isn’t quite as painful as a full dislocation, but certainly enough to jolt you back to reality eand make you change position while massaging the fuck out of it.

However, the main thing that a diagnosis gives you, is the right to talk about it.

This shit isn’ t all in my head; brushing my hair is a really fucking exhausting job, even though I cut it short because I was too exhausted to hold my arms up to brush it when it was long. My wrists and fingers do hurt. Some days I am too tired to think straight, even if the kids had a good night.

Because I’m not ‘faking it’ or ‘attention seeking’ or ‘lazy’.

It takes a huge amount of willpower to switch seven years of thinking around and start paying attention to your body. To stop ‘pushing through it’ and start listening to yourself and taking care of yourself.

To realise that this isn’t going away and plan how to minimise it’s impact on the rest of your life.

[Currently recommended: Physio, swimming, low impact exercise, healthy diet… anything else I’ve forgotten?]

I suspect that quite a few doctors in our Tasmanian health system are going to get a crash course education in Ehlers Danlos and the effects and symptoms thereof. My family is not a small one and it appears that David is affected as well as my father’s sisters and possibly their children. [Although, Dad’s baby sister is on the mainland, not down here.]

More to the point, because it is an autosomal dominant gene, it means that the children of affected parents, have a 50% chance of inheriting the gene.

We’re breeding an EDS army down here. We’ll come after you with our shaky joints and we will poke you with our poky fingers. Yes, that’s right, having a genetic condition doesn’t mean our fingers are any less poky. It just means that some of us might hurt ourselves in the poking.

So THERE.

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Seven Years

by Veronica on April 22, 2009

in Ehlers Danlos Syndrome, Headfuck

Seven years ago this February I got sick.

Seven years of doctors visits.

Of being told:

‘It’s all in her head.’

‘She’s pulling the wool over your eyes, she just doesn’t want to go to school.’

‘Her tests are clear, how is her relationship with her father?’

‘She’s anorexic.’

‘There’s nothing. Go home.’

‘Go home.’

‘Can’t help.’

‘Nothing there.’

Seven years.

Seven years of nausea.

Of joint pain.

Of dislocations.

Of exhaustion and muscle fatigue.

Of trying to tell doctors that other family members of mine have the same symptoms.

Of being given a diagnosis of Chronic Fatigue Syndrome in order to call it something, just to make us go away.

Seven fucking years.

Lots of doctors. Lots of tests.

And nothing.

Today though, today I walked into a doctors office and walked out with a diagnosis.

I was told, ‘It’s a straight forward case. It’s a clear diagnosis. I am 100% certain that this is what you have.’

I was diagnosed with Ehlers Danlos Syndrome today.

And while it’s not a fantastic syndrome to have (dislocations, joint pain, no cure, etc etc), ANYTHING is better than being called a liar. Anything is better than being told you are faking it and to go away and come back when you are truly sick.

Anything.

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Physio

by Veronica on December 10, 2008

in Ehlers Danlos Syndrome, My body is broken., Pregnant. Finally.

Right, so Monday I had an appointment first with my midwife and then later that afternoon, with a physiotherapist specialising in pregnancy.

The baby is fine, still measuring quite small, but the midwife is confident that he is healthy, just a little below average. Honestly, as the person who is intending on pushing this baby out through my vagina, smaller than average suits me fine. Amy was ‘smaller than average’ and yet she was a completely healthy weight. I have been told not to expect a baby any bigger than Amy and really, I can deal with that. Healthy is all I care about.

Plus, I have enough clothes in the teeny sizes to not really want a huge baby.

The physio was … interesting. It was meant to be a class, only the other girl booked didn’t show up.

According to the physio, all my pelvic and hip pain stems from the fact that the right side of my pelvis has twisted anterior, while the left side of my pelvis is normal. She realigned my pelvis and then gave me a sex-ay pelvic brace to wear to keep everything in position.

So.

We talked a little about my CFS and the condition of my muscles and joints which are in her words ‘the worst muscles and joints I have ever felt’. Apparently all my joints and the muscles/ligaments holding them together are very weak and not in great condition.

Even better? She doesn’t think that any of this is related to my pregnancy at all, she feels that it is all related to my “CFS” and has been aggravated by my pregnancy.

My CFS was never ‘formally’ diagnosed. It was what my GP told me I had after 2 years of tests and bloods showed nothing conclusive. It was what everything boiled down to when I was still sick and nothing could be found.

I got put in the ‘too hard’ basket.

Chronic Fatigue Syndrome though, generally has disappeared between 2-5 years after the onset. This February I will have been sick for 7 years without any change.

A while ago when Mum blogged about everything, Bendy Girl emailed Mum to ask if I had ever been tested for Ehlers Danlos Syndrome [I hadn’t] because my symptoms sounded very similar to EDS. We never thought that much about it because my joint pain and other issues were always talked about as secondary to my fatigue and nausea.

However, with the Physio having said what she did, it brought EDS back into something that may be a possibility.

I went and did some research into the symptoms of EDS and wouldn’t you believe it, I agree with just about every symptom.

  • skin that bruises or tears easily? Check [I permananently look like Nathan is beating me in my sleep]
  • wounds take a long time to heal? Check – [We won’t talk about the fact that it took me 12 months to heal from the episiotomy I got when Amy was born or that I have to take lots of Vitamin C in order to get anything to heal properly at all]
  • stretchy rubber band like skin? Check [You should see the skin on the back of my hands and elbows stretch. I just thought I was weird!]
  • loose unstable joints causing frequent dislocations [My knees both have dislocated, my left knee spends all it’s time threatening to and my elbows always want to pop out as well]
  • joint problems and pain [Aleve anti-inflammatories used to be my friend, until I got pregnant and couldn’t take them any more.]
  • double jointedness [my wrists, ankles, fingers, shoulders and hips all bend in ways other peoples don’t]

I can do this with my wrist

And this is my foot when I sit on the floor with my legs extended and foot relaxed.

Yes, I curled my toes up, it’s cold here today and I had to take my socks off to photograph. Heh.

I can also do this, but I can’t photograph while I do it, so I stole this photo from Bendy’s site.

At this stage, I’m still speculating and worrying, but coupled with everything else, it seems like it could be a possibility, especially as almost every photo I have seen of EDS causes me to say ‘but I can do that too’.

So, I’m off to my GP Friday to see what he has to say and to get a referral to a specialist who knows about these kind of disorders.

And frankly? The whole thing scares me.

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