I have EDS but it's not as bad as i thought from some of the videos ive watched. I dislocated my right arm about 3 years ago but never knew about it until the 2nd year. It was the radial head. I live with it everyday and doctors say it cant be fixed right now. Yesterday i realized i dislocated very sligthly my ulna of my elbow on the left arm recently. I'm going to get that fixed soon. It's terrifying to me but i think that even though I have this Im not going to stop fighting for a normal life
well said! i have EDS and so does my daughter. you did a great job of explaining this, i forwarded the video to her too. her fingers are much like yours. sorry you hurt so much. we get it. totally. virtual hugs.
I have been experiencing major joint pain and general pain for years. I am flat footed. I have a mitral valve prolapse. I am double jointed in both hands and feet. My ankle pops out a lot like a sprain and it pretty much hurts all the time. I can not stand lights on even when it is dark. I bruise so easily. I am currently seeing a Rheumy and she is treating me for a connective tissue disease but she doesn't know which one. What kind of doctor diagnoised you?
I think I may have EDS hypermobility type. All my fingers bend backwards well over 90 degrees and my wrists are very bendy. I can sublux my left thumb and most fingers and my wrists can get a gap in the joints with just a small pull. According to a physiotherapist I can have as much as 8 points out of 9 on the Beighton score. Now I'm really just waiting to see a specialist to possibly get diagnosed. I do work full time still though.
I'm not diagnosed yet but all the doctors I've been to say I most likely have it but they can't diagnose me. I'm going to Cedar Sinai on the 12th so they will diagnose me there. I write the exact same way you do! Everyone has told me I wrote weird all my life but now I know why. My Kindergarten teacher always put this thing at the end of my pencil to make me write the right way but it always hurt and I would end up in tears. My mom ended up taking me out because they wouldn't stop.
@Wolverineeeeeeee I have the feeling that all of us went through something awkward in our life because no one (including ourselves) new that something was wrong with us. Very frustrating, but at least the more of us that get diagnosed, the more recognition there will be that EDS exists. Good luck at the doctor!
I am sorry to hear about your EDS, I am type 3, so I understand your pain...currently both acls are torn and my right shoulder and I did not know and have been trying to walk on them for about 2 months lol.. If ya ever need to vent I am here for you.. Lights are evil, people at work thought I was trying to be cool or badass, and it hurt s when people judge you. I know it does not help to say it, but my prayers are with you.
Cont.. How do you get tested for this?? What blood test?? I have a strong family history of Muscular Dystrophy 3 relative passed in their 20's (child onset & males) is there any genetic connection?? I am so confused as to what is going on i also have the neurapathy thing. Any sugg thanks alot!!
@tiredofbeingsick Just because you aren't extremely hypermobile doesn't mean you don't have EDS, it just may make it harder to get diagnosed if you do have it. Doctors use extreme hypermobility as a way to test for EDS type 3, which is one of the types of EDS that can't be diagnosed through a blood test.
Your best bet is to go to a geneticist that knows about EDS, and have them diagnose you.
@tiredofbeingsick As to any genetic connections, I really don't know. There are large and active EDS communities on Facebook where they'd be happy to answer any questions you have. Also, wikipedia is a wonderful resource. Type in a symptom you have, wiki will list problems with that symptom. Read about them. Then type in another symptom and do the same. Eventually you may start seeing a pattern emerge that will lead you to your illness. This is what happened to me when I found out about EDS.
I am undiag and been to countless "ist" I have Fibro and i think something else not sure what ,,I'm not familar with ED?? I do have some of the symptoms you listed .I am not double jointed. I do have Mitral Valve Prolapse..I do have joints that feel like they get dislocated-esp pelvic bone OUCH. Pain!!! I do have scolosis, bowel disorders,silky skin & scary esp by pelvic bone,dense abd adhesions,uterine prolapse,Very prominant veins,problems holding light things now feel weak. drop things
Yes, I do have it but not officially diagnosed. I have been hypermobile my entire life but didn't realize everyone wasn't. I would dance around the house with my toes bent under and pretend I was a ballerina. I have always popped my joints, have fibromyalgia, easy bruising, back pain, etc. but never knew I was different. My younger son did years of gymnastics and is now paying the price, I think that is why his is so advanced. Good Luck.
Thanks for making the video. Both my sons have EDS hypermobility. One is being tested to make sure he doesn't have Vascular EDS. They have all the symptoms you just mentioned and then some. It took years of going from Dr. to Dr. and even out of state to finally get a diagnoses. The word needs to get out. I now see that my father probably died from Aorta dissection and also my grandmother. 3 out of 4 genetist picked up on the EDS almost immediately, other doctors didn't have a clue.
@81792100 Oh wow, I'm so sorry about your father and grandmother! Do you not have it?
I'm really happy though that you're going to the effort of getting your children diagnosed. This way you can help them avoid doing what I call "stupid party tricks" that they'll suffer for later. In my teens I had the habit of putting my legs behind my head and stuff, and now I pay for it.
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I have EDS but it's not as bad as i thought from some of the videos ive watched. I dislocated my right arm about 3 years ago but never knew about it until the 2nd year. It was the radial head. I live with it everyday and doctors say it cant be fixed right now. Yesterday i realized i dislocated very sligthly my ulna of my elbow on the left arm recently. I'm going to get that fixed soon. It's terrifying to me but i think that even though I have this Im not going to stop fighting for a normal life
VampArtemis 1 month ago
well said! i have EDS and so does my daughter. you did a great job of explaining this, i forwarded the video to her too. her fingers are much like yours. sorry you hurt so much. we get it. totally. virtual hugs.
debradebbiedeb 1 month ago
God your fingers are hypermobile!
LucaBlightBadass 2 months ago
@LucaBlightBadass Why yes, yes they are! XD
telephonoscope 2 months ago
I have been experiencing major joint pain and general pain for years. I am flat footed. I have a mitral valve prolapse. I am double jointed in both hands and feet. My ankle pops out a lot like a sprain and it pretty much hurts all the time. I can not stand lights on even when it is dark. I bruise so easily. I am currently seeing a Rheumy and she is treating me for a connective tissue disease but she doesn't know which one. What kind of doctor diagnoised you?
ginaw911 4 months ago
I think I may have EDS hypermobility type. All my fingers bend backwards well over 90 degrees and my wrists are very bendy. I can sublux my left thumb and most fingers and my wrists can get a gap in the joints with just a small pull. According to a physiotherapist I can have as much as 8 points out of 9 on the Beighton score. Now I'm really just waiting to see a specialist to possibly get diagnosed. I do work full time still though.
FengRuiXuee 10 months ago
@FengRuiXuee It does sound like you have it. How did you find out about it? Do you have a lot of pain?
I admire you for continuing to work full time. Really, I should be working as we don't have a lot of money, but it's best if I don't.
telephonoscope 10 months ago
I'm not diagnosed yet but all the doctors I've been to say I most likely have it but they can't diagnose me. I'm going to Cedar Sinai on the 12th so they will diagnose me there. I write the exact same way you do! Everyone has told me I wrote weird all my life but now I know why. My Kindergarten teacher always put this thing at the end of my pencil to make me write the right way but it always hurt and I would end up in tears. My mom ended up taking me out because they wouldn't stop.
Wolverineeeeeeee 11 months ago
@Wolverineeeeeeee I have the feeling that all of us went through something awkward in our life because no one (including ourselves) new that something was wrong with us. Very frustrating, but at least the more of us that get diagnosed, the more recognition there will be that EDS exists. Good luck at the doctor!
telephonoscope 11 months ago
I am sorry to hear about your EDS, I am type 3, so I understand your pain...currently both acls are torn and my right shoulder and I did not know and have been trying to walk on them for about 2 months lol.. If ya ever need to vent I am here for you.. Lights are evil, people at work thought I was trying to be cool or badass, and it hurt s when people judge you. I know it does not help to say it, but my prayers are with you.
NinjastormVII 1 year ago
@NinjastormVII I can't remember if I mentioned it or not, but I am also type 3. Thank you for your prayers. :) Every little thing helps.
telephonoscope 1 year ago
Cont.. How do you get tested for this?? What blood test?? I have a strong family history of Muscular Dystrophy 3 relative passed in their 20's (child onset & males) is there any genetic connection?? I am so confused as to what is going on i also have the neurapathy thing. Any sugg thanks alot!!
tiredofbeingsick 1 year ago
@tiredofbeingsick Just because you aren't extremely hypermobile doesn't mean you don't have EDS, it just may make it harder to get diagnosed if you do have it. Doctors use extreme hypermobility as a way to test for EDS type 3, which is one of the types of EDS that can't be diagnosed through a blood test.
Your best bet is to go to a geneticist that knows about EDS, and have them diagnose you.
telephonoscope 1 year ago
@tiredofbeingsick As to any genetic connections, I really don't know. There are large and active EDS communities on Facebook where they'd be happy to answer any questions you have. Also, wikipedia is a wonderful resource. Type in a symptom you have, wiki will list problems with that symptom. Read about them. Then type in another symptom and do the same. Eventually you may start seeing a pattern emerge that will lead you to your illness. This is what happened to me when I found out about EDS.
telephonoscope 1 year ago
@tiredofbeingsick Good luck, and if you have any other questions, feel free to ask!
telephonoscope 1 year ago
I am undiag and been to countless "ist" I have Fibro and i think something else not sure what ,,I'm not familar with ED?? I do have some of the symptoms you listed .I am not double jointed. I do have Mitral Valve Prolapse..I do have joints that feel like they get dislocated-esp pelvic bone OUCH. Pain!!! I do have scolosis, bowel disorders,silky skin & scary esp by pelvic bone,dense abd adhesions,uterine prolapse,Very prominant veins,problems holding light things now feel weak. drop things
tiredofbeingsick 1 year ago
Yes, I do have it but not officially diagnosed. I have been hypermobile my entire life but didn't realize everyone wasn't. I would dance around the house with my toes bent under and pretend I was a ballerina. I have always popped my joints, have fibromyalgia, easy bruising, back pain, etc. but never knew I was different. My younger son did years of gymnastics and is now paying the price, I think that is why his is so advanced. Good Luck.
81792100 1 year ago
Thanks for making the video. Both my sons have EDS hypermobility. One is being tested to make sure he doesn't have Vascular EDS. They have all the symptoms you just mentioned and then some. It took years of going from Dr. to Dr. and even out of state to finally get a diagnoses. The word needs to get out. I now see that my father probably died from Aorta dissection and also my grandmother. 3 out of 4 genetist picked up on the EDS almost immediately, other doctors didn't have a clue.
81792100 1 year ago
@81792100 Oh wow, I'm so sorry about your father and grandmother! Do you not have it?
I'm really happy though that you're going to the effort of getting your children diagnosed. This way you can help them avoid doing what I call "stupid party tricks" that they'll suffer for later. In my teens I had the habit of putting my legs behind my head and stuff, and now I pay for it.
You're a good parent, thank you.
telephonoscope 1 year ago