But it makes sense right? If you have EDS and your connective tissue is loose, then your muscles do all the work. But what happens if you have a flare up of an autoimmune condition that causes your muscles to be weak to? Well, then you have more joint instability, including the neck, and the symptoms so overlap that it is hard to tell what is from EDS, auto immune, cranial nerve compression or tethered cord....
One more road block, one more pill to take, but, maybe by the time this is over I will be able to open a jar of jelly by myself or at least not trip up the stairs form the office to the kitchen...
She ordered me a walker with wheels...
Really? Ugh. I know it is for my benefit, as a dislocation/break on top of this would be even worse, but a walker???? hahahaha. My grandmother doesn't even use a walker yet. Maybe I should deck it out with a grass skirt and some coconuts and turn it into my own little tiki bar...
Or I could put flashy lights and honky horn and have my very own Huffy! Oh, I know, how about a motor, spoiler, and a roll bar and I can be in Nascar!! hehe...
Anyone else out there with EDS and an autoimmune disease? What's life like with both?
good grief Trish poor you. The muscle weakness, trouble swallowing, weak muscles seem oh so familiar EDS symptoms, not just me but others here in the UK report thus. The swelling hmmm sounds horrible Complex Regional Pain Syndrome springs to mind - RSD?? The muscle weakness for me is a result of overworked muscles as you say due to oh so stretchy collagen working overtime to do that which others find normal. The tingling etc in hands and feet can be caused also by the raynauds, there is primary and secondary raynauds its worth googling. Poor proprioception (not knowing where one's body parts are in space) is a common cause of banging in to things, falling up up the stairs (apart from the knee, hip, ankle instability). I gave up long ago opening anything - we have a drawer in the kitchen with every kitchen aid to open all number of things, I have trouble opening meds in any type of container and can't abide blister packs.
ReplyDeleteAs a child/teenager I was often often very ill with autoimmune type illness associated with swollen glands etc. I used to come out in a rash allergic to any and every virus. My doctors said my body responded very reactively to each and every infection.
I hope they get to the bottom of all of this and some treatment could help you out. Not hoping obviously you have an auto immune disorder but one that could be treated would be better. Unfortunately many many people with EDS go on a merry go round of consultants being pushed between one and another and often the end reply is - it is the EDS afterall.
I sincerely hope you get some answers - you need them I think. I'll scout about the UK EDS community to see if there is any EDSers with autoimmune problems as well.
Long comment again - sorry just trying to support you through this rough old time.
On the walker front - good luck and dress it up but don't forget to publish some pictures!!
Take care Trish - thinking of you.