27, And Hoping For Answers

Hi, I have just been diagnosed with EDS type III. I have finally found doctors to believe my pain but still have yet to be genetically tested (appt set for end of June) I was told at 16 years old my pain in my left knee my due to loose ligaments and still wonder why it was left at that! I had one surgery tobremove a fat pad under my knee cap that was causing pain and no help since then. I went to 5 internal medicine doctors complaining of pain in one year and they all told me it was " normal" it still makes me laugh! How is it normal to not be able to walk up the stairs after a day of work because the pain is unbearable! My sister, who suffers from lupus, among other thing finally started taking me to her doctors because they were more receptive to my ailments. On my first visit to my rheumatologist he diagnosed me with EDS! Although I felt I finally had an answer to my pain I was too scared to actually get tested because I did not want to be labeled "sick." a year has past from this appointment and my symptoms have gotten much worse. I finally stared seeing a therapist and she has encouraged me to make the appointment for the test. Since that time I have been in so much pain work has become a daily challenge. I currently am a Laser Hair Removal technician and stand throught most of the day. Two weeks ago I climbed the stairs to my bedroom and collapsed in pain. My best friend took me to the ER where they gave me Vicodin and kept me home from work for three days. I did nothing but sleep ( and some online shopping😄). Since then I have not had any relief and have to wear a knee brace everyday. I think the most challenging part of all of this is my social life. A lot of my friends think I am making things up or listen when I explain but do understand because I "don't look sick." I've had to limit my time I stay out with friends because we are somewhere where I cannot sit, or I'm so exhausted I'm no fun anyway. I truly hope when I get the testing done they will help me figure out how to deal with the pain so I don't feel so horrible everyday. I have been mostly positive about all the things going on but can't help but be a little sad. I hope this post will bring me some others with EDS to talk with since no one can really understand unless they also suffer from an illness! Thank you for this group. It's brought some sunshine to my cloudy day :)
SuzeBee SuzeBee
5 Responses May 19, 2012

Get a joint mobility test. Start occupational and physical therapy.<br />
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Be wary of medicine men...they are usually one of two types 1. Sadists or 2. Over medicating loons ( this means you're too doped up to function)

Also get a full work up...there are a lot of other ailments EDS can cause.

Wow I 2 have EDS, and until now have never seeked any real support. I find you amazing 2 share your story hope we can get 2 no eachother more and share.

Hi im also 27, and also HATE it when people say well at least you dont look sick, or you look fine so thats the main thing, I used to model and had to give it up when I was binding my hammer toes to fit in the shoes and they would still bleed. Having to walk and smile in front of people as if you are fine and then not even be able to put a sock on afterwards isnt worth it!! Im glad to hear you can still work although worry for you that you have to stand for the most part of the day... i had to finish working last August, if there was a way to keep working I would have ....i think it is important for your self esteem. You sound like you have a great attitude so try and keep it up.Its only natural for it to get to you.... you are strong!!!

Thank you for sharing your story about EDS. I am in the process of trying to get diagnosed and going through a real hard time. If you ever need a friend to talk to, someone to just listen, or someone who understands how difficult it is to live with this disease, please contact me.

I am right there with you! <br />
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I was diagnosed when I was 30 and it has been down hill since. I like you do not appear to be sick. I am 6'1 and 225lbs and fairly well built, so most people that see me feel that there should be nothing wrong with me. However with that said I am in constant pain, the pain in my feet and ankles just about cripple me on a daily basis and my newest pain is my hip. I think it is starting to hurt because I am compensating for my feet hurting. <br />
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What I have done to try to help myself is went to a podiatrost and received custom shoe inserts as well as receive a cortisone shot in my foot now to deaden the nerve. I will tell you it makes all the difference in the world or at least until it wears off lol. <br />
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Right now for pain management I usually take a naproxen if I am hurting or ibuprofen. I have started taking a collagen supplement daily as well as a bone growth formula. IT is still hard to tell if it is working yet since I have been taking these supplements for less than a month but I do seem to be feeling a bit better. Also I was told that concentrated cherry juice will help to so I am going to try that next. Also a chiropractor will work miracles to. So keep your chin up and look into alternative methods for pain treatment because they are out there.