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#EDS

14 posts10 participants0 posts today
Public
UnCoveredMyths

I'll have another post or two later.

This post is about #EDS and finger splints.

Wednesday, I went to the hand surgeon. Thankfully, he knows EDS and knows surgery is not a good idea.

So today, I went to the OT he uses, in the same office.

I thought it was to talk about splints and exercises.

It was just to measure for splints.

The only ones my insurance covers are plastic. She made one for me.

We talked about the metal ring splints. the place she sizes for and recommends charges $100 a piece.

And she doesn't even order them.

So, I looked online. I found one called Zebra Splints, run by another person with EDS. A much more reasonable cost.

Has anyone bought splints from her?

Any other recommendations?

Continued thread
Public
JulieR

and...I completely forgot to watch my neck posture until halfway through, so that'll be like three days of headaches.

I mean, the misery of how I feel afterwards is a large part of why I struggle to make it a habit. Just saying. But, I need some movement or I hurt.

#dysautonomia#eds
Public
illmarks

Symptom: Coat Hanger Pain

I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!

I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.

Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:

Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.

For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.

https://www.illmarks.com/symptom-coat-hanger-pain/

the figure has the shape of a bright pink coat hanger on their body, the hook on their head, stem on their neck, and shoulder rests across their back and shoulders. From the coat hanger radiates dark green spikes, protruding outward and inward. From there jagged lines like electricity radiate around and through the body. The rest of the body is mostly lighter blue-purple.
#art#bodyHorror#chronicIllness
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