Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
Hello all. My name is Courtney. I'm 27 and have been dealing with EDS for just over 10 years but was only diagnosed in 2011. I was tested for every autoimmune disease multiple times and of course it always came back negative. I used to run track and cross country in middle and high school and lost my scholarship due to the increase in pain in my knees and I had to quit running my junior year of high school. I was so angry and just devestated. It actually started in my wrists when I was 3 or 4 where I would purposefully sublux my wrists because it just felt like there would be a build up of pressure and that was the only way to make it go away and it would feel good. 23 years later, I still do it...only now it hurts. On and by the way I have Type 3...classic type. They tested me for type 4, the vascular type, and thank goodness and it came back negative. The reason I was tested for type 4 is because the top half of my aorta is very enlarged and doctors check it fairly regularly for make sure I'm not in any danger of and aortic dissection. I also have an aneuysm in my heart so they keep an eye on that. Ok, sorry about that tangent. So yea, it started with my wrists then my knees and I've had 7 knee surgeries. And every doctor was trying to fix the same problem. They were trying to keep my knee from subluxing so much and it had begun to actually dislocate. That's when my new AMAZING ortho doctor referred me to a genetisist in Richmond,VA. It took her literally 15 minutes of examining me and she knew it was EDS right away. At that point, I was only having problems with my knees. It has quickly progressed to my ankles subluxing and my hips dislocate daily. I'm at that point where everyday you say to yourself "I just can't do this another day. The pain is too intense; even with the pain meds I'm on." But you go to sleep and you wake up the next day and you just have that same thought. It's starting in my shoulders and my elbows and I use a cane to get around now. I just started using the cane so I do notice the stares and can only imagine what people are thinking about someone so young using a cane. Like I said I'm 27 but I look like I'm about 22 or 23. If there is anyone else who has EDS and it's severely affecting multiple joints, how do you get through your day? How do you WANT to get through your day. I mean it's a progressive disorder and it's only going to get worse. I was told I'll be wheelchair bound by 30-35. That's less that 3 years away. I'm just scared
smheain
Hi Courtney! I'm so sorry for your pain. I've been suffering for about 10+ years as well. I used to be an active martial artist and dancer through high school and college. I was always spraining or straining 1 joint or another, but everyone just thought I was accident prone or attention seeking. My serious troubles didn't start till my 2nd pregnancy in 2002 when the cartilage holding my pelvis together gave way at 22 weeks gestation. I spent the last 10 weeks of the pregnancy in utter pain with no meds. I still don't know how I did that, but like you said, eventually you sleep and the next day comes. After I had my son (24 hours of labor and 4 epidurals later) all the pressure came off and it was able to heal. Skip ahead 2 years, and I'm working in a health club and I herniate my back. Pressure's back on the front of my pelvis and I tear through the scar tissue. Every step is agony and I'm in a wheelchair. Four months and a ton of doctors later, I find an ortho who 1) finally figures out what's wrong and 2) fuses my pelvis for me. I was supposed to stay off my feet for 3 months, then be fine. I didn't walk again for 3 years. I'm taking literally 50+ pills a day between all the opiates, anti-inflammatories, etc...and all the joints in my lower body get completely messed up because I lose all the muscle that was holding everything together. Eventually, between PT, OT, acupuncture, a ton of other stuff, and a healthy dose of pure stubbornness, I walk with a walker then 2 canes. About this time, my boys try wrestling, and my older son's shoulder pops out every time he's thrown to the mat. Both of my sons have loose joints, so I put 2 and 2 together and discover EDS on my own. I take the info to my pain specialist who sends me to a geneticist. She confirms that we all have Type 3 EDS. For the first time in my life I have confirmation that I am not a crazy hypochondriac, but the joy of that is swamped by realizing I've passed this life of pain onto both my sons. Then all the joints in my upper body begin to give way from using the canes. This is a really low point for me as I'm now looking at having to use a mechanized wheelchair since I can't even push myself like before. My pain guy finds an orthotics company that makes me customized braces for all my major joints. I look like a dumpy iron man, but I can walk without terrible pain and I'm finally off opiates. Then, this past year, I found this fantastic chiropractor that helped me control the pain enough in order to workout and rebuild my muscles. I've been braces free since Thanksgiving. I am now 41 and I have hope that not only will I not necessarily get worse, but that I may continue to improve. I still don't really know how I managed to get here. My family is a huge reason and all the people that have helped support me along the way, but mostly no matter how low I got (I was admitted 3 times to psych wards for suicidal thoughts) I wasn't ready to give up. So, Courtney, I hope my story gives you hope and the sure knowledge that you can improve. Find an orthotics person to help you support your joints as much as possible from the outside till you can rebuild the muscles to hold it together on the inside. Smile at the rude people who stare, then it becomes their issue not yours. Let yourself have bad days. And surround yourself with positive people. Pain is a fact of life for us, but it doesn't have to be your whole life. Good luck!
lilmrsred09
Ok, that whole thing made me cry. I don't know how you have hung on as long as you have and just hearing that you've had improvement is a reason for me to keep pushing on. I didn't think it could get any better, that it is only going to be downhill. I figured "ok, I got my dx. It just gets worse.", but now I know that may not be true. I'm still terrified....and the pain is awful (I've now herniated 2 discs in my back and it messed up the joint in my right hip so I'm using a cane now), and I've been out of work for a year and a half because of my back and now my hip. But thank you so very much for your story. It has truly inspired me and has given me hope which I lost so long ago. I hope all continues to go well with you and your recovery!
lilmrsred09
Smheain? If you don't mind me asking, do you live on the east coast, or where bouts do you live? I ask because I see my ortho doctor tomorrow and I was going to mention something to him about the orthotics. And if your doctor is near by, I could mention him to my ortho or pain doc. If you aren't comfortable sharing then I totally understand.
smheain
I live near Chicago. The orthotics company I went to was Scheck & Siress near Oak Brook, Illinois. (Western burbs) Every day is still a struggle, but somehow you do get used to it. I have a plaque on my wall that I love. It says "God didn't promise days without pain, laughter without sorrow, nor sun without rain, but he did promise strength for the day, comfort for the tears, and light for the way." So happy to have lightened your burden the tiniest bit. It makes my struggles easier to bear!
Join the Conversation