Ehlers Danlos Syndrome and my symptoms
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Uploader Comments (telephonoscope)
All Comments (19)
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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.
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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?
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@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.
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God your fingers are hypermobile!
LucaBlightBadass 1 month ago
@LucaBlightBadass Why yes, yes they are! XD
telephonoscope 1 month 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 10 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 10 months ago