Ehlers-Danlos Syndrome Support Group

Hi y'all, my name is Krissy. I have types 1&2 and am waiting for approval from my insurance company to see if I have vascular type also. I've been waiting a long time. Genetic testing is not something they like to approve for some reason.

Anyway, I'm 37 years young, living in a 90 year old body. I was in splints and braces and slings from the time I could say my first words. I was always the "klutz" and the Family joke was that they were going to build me a rubber room, so I couldn't hurt myself. I had to get used to putting my dislocations back in myself, couldn't afford to run to the doctor or the hospital every time I hurt myself. The older I got, the worse the pain and dislocations would get. It was almost impossible to keep a job. Which of course meant no insurance.

Skipping forward a few years...I find it hard to stand longer than 20 minutes, I have balance issues, if I stand up without thinking, one of my ankles will surely dislocate or at the very least sprain pretty bad. My left shoulder is in a constant sublux, and dislocates regularly when I try to sleep and happen to roll over. My right shoulder is starting to do the same. My wrists are very weak and I drop things constantly. My right hip and knees will go out on me (so I never know when I'm going to fall), and my ribs overlap and move at night which not only hurts like you cant even imagine, but it makes it hard to breath and wakes me up gasping for air. My elbows have started doing something new the last couple of weeks, locking up on me at night. I'm not sure why this is happening. Picked up my coffee mug (decaf) a couple of weeks ago and dislocated the two fingers in the handle that were in the handle of the mug.

Everyone tells me to use my walker. Easier said than done when you have shoulders that won't stay in the sockets, and wrists that are to weak to lift a gallon of milk.

And the pain...the pain is like being run over by a truck every single day. Some days it's a little truck and some days it's a great big truck. And every time I get out of bed, or up from a chair, I feel my old enemy gravity trying to rip me apart.

I really don't remember a day without pain. I can say that I've had days in the past when I've been able to do things that I can't do now. Things that I miss. But I've always had pain. And this past year it just seems to be getting worse. I wish there was a cure, I wish there was a way for all of us to get the collagen our body needs and a way to make our ligaments nice and tight like rubber bands, instead of like old chewed up bubble gum.

Maybe someone should invent ligament transplants

Wouldn't that be nice??? Ligament transplants. Or a supplement you could pop that would produce more collagen.

How do you deal with this? How do you not go crazy with the pain? With depression, anxiety, and all that?

Do you swim at all?

I do swim, but we just had to close our pool for the year. I get alot of relief in the water...it's the only time I don't feel like I'm being pulled apart.

Sometimes I feel like I AM going crazy from the pain. I have been through two pain management specialists and am still looking for one that is willing to learn about EDS and the pain involved. (And one that's in my insurance network). Right now my GP is doing his best, but it's just not enough.(He's not experienced in pain management) I'm really at the end of my rope and I pray ALOT. I spend most of my time in a hot bathtub or in bed lately. Right now I just don't know what to do until the phone rings, hoping it's a Dr. that can help with the pain.

I really hope that things get better for you. I can't imagine being in as much pain as you are.

I hope that being here and being able to talk about it with people that understand at least helps you to know that you're not alone. Do you have a good support system at home?

Thank you kitkat. Yes, my husband is the best. I am very lucky to have him in my life.

And you are so right, it does help to talk to others who understand what you are going through.

I am starting to get to the same place Krissy, over the past several years my EDS went from ouch my shoulder just went out of joint this week to, I can't sleep on my side because my shoulders come out of their socket and I can't sleep flat on my back because my hips feel like they are in a vice grip and about to fall out. I am finding these support groups on line and I am hopping that they help with the going crazy thing or the depression thing, because I have not been my self the last couple of month, sense I got the final word that I have type 3 and that none of my shoulder surgeries have lasted more than 4 months before they start to slip out again. I have a supportive wife but I don't want to burden her with the pain that is starting to be more and more an every day occurrence.