Diagnosed with hypermobile Ehlers Danlos Syndrome

Six words.

That is all it took to unlock a lifelong conundrum.

‘You have hypermobile Ehlers Danlos Syndrome’.

The moment the Consultant said those words there was a glimmer of hope that I might get my life back.

In a nutshell

I am no Ehlers Danlos expert.  I even struggled with the pronunciation until I found a recording to mimic!

Two great websites have provided me with invaluable information. They are the Ehlers Danlos Support UK and The Ehlers Danlos Society.

There is also the fantastic book by Claire Smith called ‘Understanding Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder’. Well worth a read.

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But let me try to provide a very limited overview.

Ehlers Danlos Syndrome is a genetic connective tissue disorder. Connective tissue is found throughout the body providing support for skin, tendons, ligaments, blood vessels, internal organs and bones.

I have the most common type of the syndrome ‘Hypermobile EDS’. This means I experience a plethora of issues that ebb and flow hour to hour and day to day. My main symptoms include:

  • Joints that hyperextend, slip out but also get stiff.
  • Dizziness, the shakes and heart palpitations (Postural orthostatic tachycardia)
  • Anxiety.
  • Allergies, sensitivities and skin rashes (Mast Cell Activation problems).
  • Persistent fatigue.
  • Numb/white fingers and toes (Raynaud’s Syndrome)
  • Digestive problems.
  • Restless legs.
  • Wheezing and coughing that mimics asthma.

Receiving my diagnosis

Getting my diagnosis was a relief, a total and utter relief. At 49 years old my chequered health history finally slotted in to place.

I have spent years visiting doctors, each of them looking at one issue at a time. I began to think I was imagining it all, that no one believed me and worst of all, I must be weak and should just ‘pull myself together’. Unfortunately the multitiude of symptoms did not get joined up.

In January this year that all changed when an amazing man viewed me in my totality.  The sum of my parts made sense when put together. I am so grateful for this, it has been a while coming, but better late than never.

Supported by outstanding advice from my Consultant I am now on the path to getting my life back.

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So what next?

Hypermobile Ehlers Danlos Syndrome cannot be cured, it can only be managed. I have been reassured that with effective and continuous management I can live a full and enjoyable life.

The first stage is to build myself up putting in place the groundwork for future health. My prescribed treatment for the next six to twelve months is a daily dose of :

  • Tablets.
  • Vitamins.
  • Probiotics.
  • Isotonic drinks.
  • Yoga and meditation.
  • Incremental exercise, balanced with rest.

Touchwood it seems to be working. The hardest part is introducing exercise cautiously as you know how I love to run. Competitive running may not happen again for me, but that does not mean that I am stopping completely.

For now I have to find a way to enjoy my passion whilst reacting to how my body copes. I do not know where this will lead, but one step at a time.

The first steps are steady run/walks and cycling guided by my heart rate to ensure I do not over exert myself. It is a learning curve, but nothing can detract from the joy of being on the trails again.

In the meantime, have you got any tips on running whilst managing a lifelong condition? I think I could do with some.

Nikki x

2 comments

  1. Hi there Nik, lovely to hear from you. I am so sorry to hear about your health issues but honestly, relieved for you that you have finally found someone who can join all the dots and make sense of the ill health that has dogged you for so long. It’s great that you now have a path towards managing this well and effectively and I know of no-one who will be more focused on building that framework towards better health. Lots of love to you, Lxxx

    Liked by 1 person

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