I'm Gill & I suffer from EDS It never bothered me when I was younger & I quite liked being so 'bendy' and being able to dislocate my joints at will.
However, after a nasty car accident I was left with a replacement cervical spine (BAK Cage C4/5/6), severed L brachial plexus, dislocated L Trans Mandibular Joint (now wired but still "clicking"),
severe L "foot drop" (now splinted) and PAIN+++ To add to my misery I am left handed!
In 2010 I had my L femoral tendons lengthened - which due to the EDS took an age to get over as the scar split three times!
My left leg (the one with foot drop & extended tendons) is now at least twice the size of my right and I have had very elevated inflammatory markers in my bloods for approx. 2 years. These markers are getting higher & higher and on Thursday my consultant said he is "..concerned he is missing something drastic, if not sinister..."
He ordered more bloods and upped my steroid inhalers as my asthma is getting worse as I age. (I'm now 60) I'm now wheelchair dependent as attempting to stand for even a minute is excruciatingly painful.
Any ideas what he "might be missing" ?? I thought it was just secondary to my tendon op, but it seems that is not the cause
It will be months before I get to see him again as the clinics are always full & I'm concerned my spinal problems could be masking something nasty aka a tumor
Anyone else in a wheelchair with EDS & elevated inflammatory markers??
We could start an exclusive club where we can feel sorry for each other LOL!!!