Ehlers Danlos Syndrome Issues

Archive, Arthritis, Covid Week Eight, Covid-19 Lockdown, Health, Hips, Hypermobility

EDS Strike’s back!! This last couple of weeks have been honestly quite hellish. Pain is all consuming and it feels like there’s no end in sight.

This is a dark dark place to find yourself in, felt trapped and lonely and deeply depressed. It’s not often I’m this low, and I usually hide it away from others, except family as they physically see it.

But as it’s May it’s #EhlersDanlosAwareness month I thought I’d share my woes.

I have EDS Hypermobility type, formerly known as EDS type 3.

Hypermobile EDS

People with hEDS may have:

Currently, there are no tests to confirm whether someone has hEDS.

The diagnosis is made based on a person’s medical history and a physical examination.

On top of this I have MCAS too Last Cell Activation Syndrome,in which I can be allergic to the air, a scent, a food, a colouring at any time! Thankfully though mine seems to be more flushing and heating. So it’s manageable.

For my EDS my hips, ankles and shoulders are the most affected. And recently it’s been my shoulders, Ive wanted to amputate them so many times this month already.

To combat the pain and instability, as they are subluxing while dressing or brushing my hair, Ive been going back to basics, to pull the ligaments and tendons back into line to hopefully make the shoulder more stable.

Lying in bed with it just hanging down is literal heaven right now. The arms weight naturally pulls it right in the joint, so it sits comfortable.


With the ball I rotate it in circles going clockwise, then anti clockwise, and gently roll up and down. Though SMALL movements to ensure it stays in joint and not extending too much.

There are some amazing YouTube videos by #JeannieDiBon https://youtu.be/jQjKzp-QxWg

And you can find her on Twitter too, for a wealth of advice and guidance.

@jdibon Twitter.