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Ehlers-Danlos Support UK
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Discovery of HMS - Relief or Frustration?

I've been struggling with pain my whole life.

I remember being around the age of 6 and crying when walking home from school because my ankles hurt so much. I got cramp later on that day and my mum didn't know what to do. I got told I had arthritis in my toes and fallen arches at the age of 7.

I wear splints on my thumbs to be able to write. I wear arch supports among other things. I read recently that HMS is linked to being dizzy/fainting. I had brain scans when i was 13 because i couldn't stand through dizzyness and was on vertigo medication for a year.

My skin is as dry as the sehara desert, and thin to boot. My shoulders/arms dislocate and i'm in constant pain.

I got told my body was hypermobile (with a 9 Beighton score) after tearing my ACL - which they misdiagnosed for a year and I had to just walk with a cane before they actually gave me a scan a year on.

I recently discovered HMS... And began crying. Because everything I was reading made sense. I have an appointment to discuss options and to get a diagnosis on tuesday... I just don't know whether to feel relieved or frustrated? I'm almost 21 and just now finding out that all of my different conditions may be caused by one disorder; that I am not a hypochondriac and I actually have a right to complain in stead of being told "everyone gets aches and pains."

It's so nice to read so many similar situations here... I feel understood for once.

Thank you for reading this!

3 Replies

So glad you have got the answers at long last, my son who is 26 has just been diagnosed after a similar story. The change in just knowing what you are dealing after years of negativity will make such a difference to how you feel

Good luck with your journey

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Welcome to the group, and I hope your appointment goes really well!

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Fully understand how you feel, welcome, I got my diagnosis at the end of 2018, at the age of 40.

Hopefully you now can get all the help and support you need, the NHS team behind me have been superb.

Best of Luck.


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