Ehlers Danlos Syndrome

EDS hyper-mobile skin

So here’s the thing and I’ve been debating whether to write about it or not; I have EDS, Ehlers Danlos Syndrome. I suppose that sounds like I’m going to die. Well, I am, I mean we all will but will I die from this? I don’t know, not directly from the type I have, it’s not like you get it and doctors are like okay you have 6 months to live. Some people will in fact die as a direct result of EDS particularly the vascular type. With that type all your arteries and organs are like tissue paper and you die from arterial ruptures. I have type 3, hyper-mobile, which is the most common and I guess least life threatening; still it sucks a fat one.

So all types of EDS is basically a connective tissue disorder; collagen, which is every fucking where so basically nothing works right; you’re not held together right. My biggest complaint/problem is that all of my joints subluxate (partially dislocate) all day, like 20-30 times a day and it fucking hurts. Besides that I just generally don’t feel well often; tired, brain foggy and gastro issues; I have a hiatal hernia and GERD. The GERD I’ve pretty much got under control through an insane regimen of probiotics, digestive enzymes and diet and when I fuck up that routine, well, it sucks.

So, how did I find out about this issue? You would think that it’s pretty straight forward. Go to the doctors, say I don’t feel good and everything hurts and all my joints make these horrible popping, snapping sounds. They do a shit ton of blood work, it all comes back normal. They do a shit ton of x-rays, oh there’s some arthritis in your back and knees (I’m 32 at this point) but that doesn’t account for the overall shit you feel like and pain level so basically you’re told that it’s in your head and why don’t you take some anti-depressants.

Well fuck you. I know this shit isn’t in my head, I can feel my fucking joints moving in and out of place and while I’m not a doctor I’m not a fucking idiot either. As the symptoms and manifestations of EDS vary greatly from person to person it often takes years to get a proper diagnosis. It took me over 10 years. I first went to the doctors when I was about 22 because my knees hurt all the time. Blood tests, x-rays even MRI, all good, I never tore shit, just joints moving in and out of place. So they told me I’m crazy and I said ok, fuck it, I’m crazy and I’ll just have to deal with this pain, which I did. For over 10 years. By the time I was about 32-33 the pain was so bad, my stomach was so fucked up and I just generally felt like such shit I was crying almost daily wondering how in the fuck am I going to live another 30 years like this. How am I going to go to work, how the fuck am I going to do anything? All I did was go to work and go home and lay in bed. The thought of suicide was comforting and I thought about it multiple times a day.

So I did the whole doctor shit again and they told me the same thing- arthritis. The gastro told me GERD, ulcers and hiatal hernia. Well fuck me, none of this shit could be related huh? All this shit is spontaneously happening independent of each other? In the meantime I finally get some Percocet and antacids which sort of masks everything. So I started looking online and spent hours, I mean hundreds of hours reading about shit. I had actually read about EDS and everything fit except the hyper-mobile. I wasn’t hypermobile so I blew that off. About 6 months later I ran into again and saw pictures of what “they” whoever the fuck that is, considers hypermobile and holy shit, wouldn’t you know it, I am hyper-mobile. I thought everyone moved the way I did but I guess not. I knew at this point what I had and it was a fucking relief to know, to have an answer.

So now I had to go back to the doctors and tell them what the issues were so I can get a diagnosis on paper. That wasn’t too bad, it only took me going to my primary to refer me to yet another rheumatologist who then referred me to a geneticist.

Now I have an official diagnosis, hooray, but there is nothing to do about it. Basically just take super good care of myself if I don’t I feel worse than I normally do and that sucks. There are some people who I’ve read their stories and they sound a lot worse than mine. I can still go to work and do shit I just have to watch what I do and how much and of course take pain meds which fucking sucks. I never thought I’d say I fucking hate pain medication but I do. I’m so tired of having to take it just to feel like I can function, I am worthless without it. If society ceased functioning tomorrow someone would kill me and eat me within days. I’ve been thinking about getting off just to see what happens, it’ll probably suck. I’m not even sure how to go about it. Well I am but it seems daunting. Whatever, I don’t want to complain, there are plenty of people out there who have it worse. Yeah, there are plenty who have it better too so what the fuck do I know.

Here’s some links to people who have it worse, tell better stories or give more detailed information if you give a shit. I probably wouldn’t if it didn’t affect me so no worries.

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