Tag Archives: Ehlers Danlos Syndrome

Stories about Ehlers Danlos Syndrome (Hypermobility Type)

How to get Diagnosed with EDS and Dysautonomia – “Google Saved my Soul”

My story of how I got diagnosed with Ehlers Danlos Syndrome (EDS) and Dysautonomia – “Google Saved my Soul – but I’m Still a Little Bit Mad”

OK I’ve been saving this one up. Stewing on it and cooking up my mad woman.

Hence attached photo of angry woman – she is how I feel on the topic to come.   I make no apology for the length of this post, it’s reflective of the time it’s taken me to get the correct diagnosis of EDS…

Prepare yourselves, especially if you’re a general practitioner/physician…. Continue reading How to get Diagnosed with EDS and Dysautonomia – “Google Saved my Soul”

Living with Dysautomonia and EDS – Chapter 2 “The Poo Truck”

What living with dysautonomia and EDS feels like – “The Poo Truck”

My wham bam health issues appeared in November 2014. However, looking back, before my ‘tsunami’ of symptoms hit, a slow trickle of odd symptoms had appeared.  I’d been under quite a bit of stress from a job for a period of 6 months and I had a few odd, isolated bodily symptoms occur (which I can now recognise as the early warning signs).  I had weird aches in my hands, I was thirstier than normal, I was wired and tired, I got the shakes when under pressure and I started getting weird nightmares on top of insomnia (Dennis the Menace flying spider kind of nightmares).  I then experienced the ‘oh god I feel shit I must be unfit’ after pilates (come on?) and I had my first proper almighty so-called panic attack (an ambulance job).  But many of these were simply explained away as stress related reactions.

Then I sealed my fate by visiting some hot springs for the day in late November 2014.  Continue reading Living with Dysautomonia and EDS – Chapter 2 “The Poo Truck”

About Ehlers Danlos Syndrome – “Pushing through Fatigue”

What living with Ehlers Danlos Syndrome feels like – “Pushing through Fatigue”

I just watched a really informative video by Dr Alan Pocinki who specializes in treating patients with Ehlers Danlos Syndrome (link here). Whilst it is specific to EDS and people who have hypermobility the themes in here are very relevant to anyone who suffers from fatigue so read on… Continue reading About Ehlers Danlos Syndrome – “Pushing through Fatigue”