Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Contractures in Ehlers-Danlos Syndrome


Donna aged 4 with feet a Vascular Ehlers Danlos is the gift that just keeps on giving. In late childhood I was diagnosed with juvenile arthritis. In adulthood I got a lot of the joint issues managed until I was around 45 years old. Then I had times I was moving like an 80-90 year old. Post chemo by age 48 it was even more challenging. But given 90% of folks with VEDS are not known to live past 48 years old, I guess I’m around 100 years old in VEDS terms so I’m doing ‘great’.

I keep my osteopath in business. If it isn’t sprained ribs, my diaphragm having gone into spasm, multiple leg muscle groups in spasm and the psoas muscle from hell, then its contractures. They have worked on my hands, on my feet. I then went to the osteopath about pain in my sitz bone – the ischial tuberosity. As a breast cancer patient I wanted to be sure this bone pain had some sound association with my usual challenges with the associated muscles, tendons and joints in that area.

Plenty of spasms and contracture that could account for it, as connective tissue joins to this bone so the pain that can be felt at the bone can actually be caused by connective tissue issues. So now we’re working on my hips which have developed contractures, limiting some of my leg movement, so, for example if I sit cross legged, my knees stay up, I have limited rotation at the hip joints. So I’m entertaining myself with physio exercisesand hopefully when I stand up I don’t clunk or limp trying to walk. Its painful as contractures are tight and everything pulls with this rather sickening dull ache. Hot wheat bags help get things started, epsom salts baths and magnesium supplementation do no harm, and I’ve done the valium as muscle relaxant, done the Meloxicam and the Prednisolone and the 20,000mg omega 3s and in the end I keep trying to just wing it.

But with EDS known to effect 1 in 5000 people (probably much higher in the autism population) and VEDS being 1 in 20,000 people, even the VEDS specialist is still learning on his toes about what is part of VEDS and what’s not. I researched contractures and EDS. I found an article on someone with palmoplantar contractions in VEDS that reminded me of my recent 10 month stint with inflammatory tenosynovitis of the hands and feet. Then I came across another article about joint contractures in VEDS. Most people are now aware of subluxations and dislocations in EDS, but not as aware of ligament and muscle tears and strains that occur spontaneously in EDS nor aware of related contractures.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

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