I have EDS a genetic disorder that causes early onset osteoarthritis and ligament damages because of hypermobility causing easy dislocations and sprains. My entire neck is riddled with osteoarthritis and nerve damage throughout my neck and down through my fingers. I frequently dislocate joints and sprain my ankles all the time. I suspect that my vertebrae are loose and wiggle around too much and that is why I've developed osteoarthritis, but they don't cooperate with the mri lol. It also causes severe muscle spasms that can last days, weeks, or months and causes problems with proprioception (the ability to unconciously know where your limbs are in relation to the space around you) which causes a lot of tripping, falling, knocking stuff over, balance problems oh so many things I've struggled my whole life with all connected to this stupid mutated gene.

It's a literal pain to deal with, but hey at least I get a cool party trick of being able to twist my feet around backwards and bend my fingers flat back. Lol

Does the anger ever get better? The resentment and the emotional pain and the bitterness that come with it? Not to mention the jealousy of watching others do so easily what you can't? I hate feeling like this. I'm a generally happy person who jokes about drawing the short stick. I laugh a lot at informercials with outlandishly clumsy people because I actually am a walking infomercial (the old guy that throws the popcorn bucket out the window? Yep done that!) And I hate feeling so angry at the person next to me who can easily do a flying roundhouse while I struggle to knife hand.

I love my taekwando and I will fight until I can no longer walk to keep going. It's my outlet. When I'm fighting I feel like I'm fighting my own disorder instead of a punching bag. It makes me feel less helpless and that's what I cherish most.

@LadyAlyxandrea , my anger eventually subsided to an acceptable level but on occasion it pops back up. Now it's mostly a quick episode of sorrow or longing. For a long time I felt cheated because I thought things like this don't happen for another >15 years or so, that was where most of my anger came from.
I try to reason with myself using the example of remembering how I felt as a child while playing with a large box. That box could be anything from a car to an airplane or a house to the imagination of a child. I can't do that anymore but I do fondly remember how I felt. I try to transfer that onto the the things I can't do now compared to a few years ago. I attempt to reason the feelings with the box are now unobtainable due to my changing brain and body chemistry, using that example to apply to "I can't do the things I used to because my body is changing" (I try not to use the phrase "My body is getting older" as that can cause problems with acceptance).
I finally gave up, I quit fighting the limitations and told myself to be realistic (I feel it was the best thing I have done since the diagnosis). I began to live within the limitations and found I wasn't quite so limited as I was afraid of being. By living within the limitations I have become mentally stronger and I am not defined by the limitations but how much I can actually do physically. Just don'y push yourself too far and make things worse.
It will take time and it's difficult to do, I won't lie to you about that. If you can come to acceptance you will be more at peace with yourself and with life.
Sorry for the rambling and I hope this makes some kind of sense to you.

@MacTavish I didn't find it rambling. It was very nice of you to share your experience. Thank you

Take away my job, my video games, and my taekwando and I'm just a movie addict withering away in a basement apartment somewhere. I fear that.

Lol you Crack me up

@jorj You have to train with respectful people...people who want you to succeed as well as themselves. Knee bar go bad? Just thinking about that...ohhh...ick. Ouch.

@jorj I was a year older than that when I began training...MMA wrestling...but I saw after about a year that a serious injury was in my future and a health issue emerged that made it unlikely I was going to be able to get a pro-fight...I am a heavy weight, so we can fight older...haha

You were the one who said your sister has EDS right? you might also. Dystonia (chronic muscle spasms) are very common in it and it's genetic.

@LadyAlyxandrea My niece's wife. So no blood relation.

I have Fibro and CFS - also degeneration in the discs of the neck and lower back. It makes life interesting.

@ScienceBiker collegen v

@RavenCT I bet. Sorry to hear that

I do my best to be tough lol and thank you for looking it up, most people wouldnt care to know that badly

Well hello! Nice to meet you! I find that it's currently straining and exacerbating my disability, but simply because I'm still learning my limitations and postures. I sprain my ankles walking on flat surfaces, so I'm trying to learn how to move without doing these. I start occupational therapy Monday to work on my fine motor skills, and in two weeks I'll be seeing a neurologist again to address ways to attempt getting some proprioception to limit damages. To say taekwando furthers my disability, I don't believe would be accurate since nothing happens there that doesn't happen walking to the bathroom at home.

I decided when I'm in a wheelchair 30% of the time, I'll quit, but as long as I can move these wobbly stupid limbs, I'll keep going.

I just hope a claims person doesn't see this as evidence I'm faking. I mean, I do have extensive evidence I'm not, but my work comp case showed me people will try to use anything they can against you and I'm scared of that.

@LadyAlyxandrea You're right, we have to look at all the evidence we can get. Work comp is more narrowly focused than STD is. WC looks at if it is work related, STD is overall disability. Life can be disabling. Taekwondo could be part of your therapy to help you get better. I hope you have a good experience and you get the medical help/advice you need to get back to good health.

@HippieChick58 I appreciate the advice. My pain specialist thinks it's beneficial to me both emotionally and physically

It's a genetic disorder that causes a plethora of issues like hypermobility with connective tissue damage and dystonia. When I was 14 I was diagnosed with juvenile arthritis after tearing all the ligaments in my knee. When I hit 23 I destroyed my shoulder because I turned wrong when lifting a 45 pound dog. I have now learned I have early onset osteoarthritis throughout my cervical spine and nerve damage all through my neck and arms into my hands. It's degenerating at a fast rate and no one seems to know what to do since the procedures and treatments aren't helping and they are adamant against a full neck fusion at a young age, which also will probably not reduce the damage done. My joints are essentially destroying themselves because I have a mutation in my genetic code.

If they had learned that I had EDS sooner they could have prevented a lot of the damage I have now, but it's so unknown by most doctors that it wouldn't have been possible to find it earlier.

@LadyAlyxandrea Did you have JRA on top of the EDS? Because that's just "ugh". Unfair.

@RavenCT not JRA I don't test for the RA factor, but regular arthritis

Rolling my eyes at myself. I should know the difference.

Storm coming in here and just terrible (pain) night - hoping to sleep in the daytime.

Barometric swings of legendary proportions are not my friend.
Also probably not your's either.

Hang in there.

@LadyAlyxandrea I am so sorry, that you have this painful challege to deal with. I can tell you that I have no rotor-cuffs, they both have been repaired and came back out! So now I would need replacement joints in both shoulders. My neck is still out and somewhat stiff. But, I have no pain. And none of that depression that I had for last 30 years. I wish everyone had my luck, because pain can be a distraction from living. I did have a lot of psychotherapy over the years and I would think that it gave me a hand up. There is also a lot of pain, in my family, so we may have a predisposition to something, that has never been diagnosed! I would like to say, don't give up and work with what you have going for you at this moment. You are still, a person with talents and skills and hopes and dreams. Stay connected to them as that is 'who' you are...it is easy to fall into the belief, that you are your pain. My, 95 yr old neighbor, who had a very painful knee and heart problems, that prevented having surgery...was always saying, we 'must do stuff, that will distract us from our pain' I found the same thing to be true. Live your life, not your pain...you have a purpose to fullfill, regardless of your body...best of luck and keep posting!

@RavenCT ...funny, that you brought up that, barometric pressure, as I also coped with that for years...heard many other people complain about it, too!

@LadyAlyxandrea I should report that my lower back surgery was only to remove the arthritis, but 'they' nicked my spinal column and for the next 2 months it leaked and made a large pouch at the bottom of my back. So I had to have second surgery to repair the nick and it was after that, when I have become pain and depressed free! I want to find out, if it had something to do with that leaking spinal fluid, that cleared out something? It is connected to the brain, too.

@RavenCT I feel you, I woke up at 330 this morning and have been struggling to get back to sleep.

@Freedompath it's entirely possible. The human body is so complex and strange and there is so much we still don't understand. I'm putting my faith in genetic alterations, hoping they can somehow remove the mutated gene and replace it with a healthy one, or stem cells can reverse damages but it is costly and risky to try. I am glad you are pain free at least, even if it's a mystery.

EDS, early onset osteoarthritis of the entire cervical spine, severe nerve damage throughout neck shoulders arms hands and fingers

@LadyAlyxandrea i can see your point and the docs point. you will just have to do what makes you feel best emotionally and physically.that is a tough situation

I appreciate your advice and your willingness to listen to me vent. It really means a lot to me, as my family is pretty tired of my whining.

I would have to say F&*# what they consider your “whining” because what is actually happening is they are invalidating your feelings. Do they live your life? A person who loves you deeply and unconditionally like all of our “Friends” and “Family” are supposed to would take the time and effort to make you a priority to sit and listen to you with empathy, attempted understanding, love and value until the cows come home.
And then if you still felt the need to vent they may have to say “I’ve got this going on but I’ll get back to you ASAP.” Then even if you have the same thing to say they listen again....maybe try to give you advice (but not get pissed if you don’t take it) because again IT IS YOUR BODY. But simply being a compassionate human being means just listening to someone in a genuine heartfelt way.
So if you ever need that you know where to find me.@LadyAlyxandrea

I do have statements from my pain specialist that he encourages me to continue within my abilities and that he has barred me from participating in sparing (darrrrn I really want to spar!) So I'm hoping that, along with testimony from Master Sebilia will help

Genetic disorder of the connective tissue

Alright i see, im very sorry