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.

15 weeks post #HipReplacement

Archive, Arthritis, Health, Hips, Hypermobility, Hip replacement, SURGERY

Has the weather turned for you? It sure has here, sadly with that comes the ever present extra aches, my hands are becoming clicky and stiff once again. (The reprieve wasn’t long enough)

The hip is achy and not feeling so painfree, but as every other joint hurts I know it’s just that time it’s all meant to hurt again. So it’s definitely shoots my happiness in the foot. But I need to make the most of it, as the weather is never going to be permanently dry and warm, mores the pity!!

I still can’t do weights, but as joints hurt, I have to do some physio to engage the muscles and stop them from dislocating.

Can’t hold weights, but I can pull the theraband resistance bands, that o have tied to my door. These are stabilizer exercises for the shoulders, but they help my wrists and elbows too.

Finished off with rolling a ball in a circle to the right, then circle to the left, then push the ball up and down the wall, do this both shoulders.

So it’s week 15 and though I have had rapid recovery as predicted. I’m still walking with a walking stick, I have numb areas, (seriously cant feel a thing!) Niggles of pain in groin occasionally, and thigh aches. Knee pain occurs with physio but quickly disappears. And the whole thigh still swells up.

But upon reading medical journals, it seems it’s not unusual for the recovery to keep going albeit at a slower rate for the first 2 years. So it seems frustrating at times, but really it is early days.

And here ends my daily updates, as now the progress is more minimal, and things are just going to be repeated until it gets fully better. I’m thrilled that I never once felt alone in this recovery, so thank you so much.

Day 90 #hipreplacement

Archive, Arthritis, Health, Hips, Hypermobility, Hip replacement, SURGERY

It’s always up and down health wise, I guess it’s the #EhlersDanlosSyndrome not really helping. But I’m pleased to say it’s not actually my hip causing any grief at the moment.

And because it’s that time of the dreaded month, every joint comes out to play. Cleaning the cooker, my shoulder decides to pop out!!

So with this is mind, I’m thinking I need to keep on going with the occupational therapists shoulder stabilizer exercises.

  • Ball on wall circle left 20 reps x 3
  • Ball on wall circle right 20 reps x 3
  • Ball on wall up + down 20 reps x 3

  • Band shoulder abduction 10 reps x 3
  • Band shoulder internal rotation 10 reps x 3
  • Band shoulder external rotation 10 reps x 3
  • Band shoulder extension 10 reps x 3

All this exercise is always to help stabilise my joints, help my muscles and tendons do the work the joint should actually do.

Day 30 post #hipreplacement new discoveries

Archive, Arthritis, Health, Hips, Hypermobility, Hip replacement, SURGERY

As it’s been a real roller coaster week, with so many dips, twists and turns, I was pleasantly surprised my body is feeling more normal.

What I mean by this, is in the night I’m starting to turn over, easier and more freely. (No side sleeping yet, still odd feeling) but I can easily get onto my front.

And today I knelt on the floor to hunt for something under the sofa, just like that I did it on autopilot, without thinking?? Horrified afterwards when I realised what I’d done, but then secretly pleased too. What a milestone.

So that means I know I can get onto the floor and back up again (providing there’s a sofa to help crawl up) but it’s progress.

While I’ve been taking it easy on the hip physio, I have been concentrating on shoulder physio.

  • Shoulder circle clockwise 15 reps x 3
  • Shoulder circle anticlockwise 15 reps x 3
  • Shoulder push up and down 15 reps x 3

I use my grandsons ball, and just gently circle both ways and then go up and down the wall. They seem extra loose since the crutch usage increase.

New exercises I want to try this weekend are

Now my mini squats are much better, I’m feeling ready to use a ball against the wall squats. Again I will just use my grandson Leonardo’s ball.

And to help build up the arms before I go back to lifting weights, (don’t feel steady enough just yet) I though wall planks would be good. (I don’t feel confident enough to do on the floor either)