tag:blogger.com,1999:blog-4432236084277616274.comments2023-09-13T04:30:15.414-04:00The Ehlers-Danlos BlogUnknownnoreply@blogger.comBlogger13125tag:blogger.com,1999:blog-4432236084277616274.post-87805628167140499062019-05-13T03:28:00.949-04:002019-05-13T03:28:00.949-04:00This comment has been removed by the author.Anonymoushttps://www.blogger.com/profile/02006181831896385318noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-46942432140481270662018-04-11T01:10:39.526-04:002018-04-11T01:10:39.526-04:00I’m exactly where you’re at. If it wasn’t for my f...I’m exactly where you’re at. If it wasn’t for my family I’d never see another doctor again. I have fibromyalgia and eds and tmj. I honestly think about death every day, was a A student, now I can’t take more than one class at a time. I get so scared thinking about my life stretching out in front of me, no help, no relief. They gave me antidepressants when I first started talking about the pain, which is very real scientifically proven physical pain. Right now I’m just drifting through every day, I still have something keeping me here, idk on top of that I have ptsd, It’s weird how some ppl have such huge burdens to carry, like my life just keeps getting objectively worse and I look around and kind of hate ppl who nothing ever happens to. Ive turned bitter and cynical, and Ive lost my ambition, that’s what I hate the most. onlywhenI'mthinwillIwinhttps://www.blogger.com/profile/06564247393455280613noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-62170369766742132492017-01-06T11:29:59.483-05:002017-01-06T11:29:59.483-05:00An amazing soul inside that beautiful dog! So happ...An amazing soul inside that beautiful dog! So happy for Kate! Yet, I must ask being the animal lover I am....does Byron ever get a day off to play, sleep ...to just be? Please.....Anonymoushttps://www.blogger.com/profile/14641319263271179346noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-7735365909036216642016-02-12T07:08:05.337-05:002016-02-12T07:08:05.337-05:00My heart breaks for his friends and family, but go...My heart breaks for his friends and family, but god this article SCARES me. It brings reality crashing in and reminds me that a chronic disorder truly can get worse with age. It is really scary after feeling first hand how quickly things can take a turn for the worst. Really truly scary. Stories like this make me even more focused on living for the now and in the moment because I truly have no clue what my body has in store for me ten years away... or even tomorrow. EDS Athletehttps://www.blogger.com/profile/09254987722474962990noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-31006865982776301352016-02-11T23:05:32.946-05:002016-02-11T23:05:32.946-05:00This is so sad, but I understand it. I have EDS, &...This is so sad, but I understand it. I have EDS, & I'm not on any meds. I gave up on doctors. None of them knew anything about EDS except the geneticist, who couldn't give me any referrals. Suicide crosses my mind, although I wouldn't act on it. I see a shrink but he doesn't know the first thing about EDS. Several docs I've seen act like EDS is psychosomatic, but it's not. The pain is real, it's unrelenting, and it just gets worse. The hardest part for me is the nerve pain. My body is deteriorating from head to toe.Fluffyhttps://www.blogger.com/profile/11063294606171443765noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-44521090885359736242016-02-11T20:51:31.836-05:002016-02-11T20:51:31.836-05:00RIP Dorian. Ive been there, any thing to end the p...RIP Dorian. Ive been there, any thing to end the pain. you poor soul. but you are at peace now. thank you for fighting as long as you didAnonymoushttps://www.blogger.com/profile/14448575248190971849noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-39445463141552441682016-02-11T19:38:26.264-05:002016-02-11T19:38:26.264-05:00I have a 17year old daughter, as well as a 12 year...I have a 17year old daughter, as well as a 12 year old son and my self,who struggles with the pain of EDS and the related conditions, as well as the problems the medications have caused. The underlying conditions treatments have done more harm than good. Like a lot of chronic pain victims, my kids fell into deep depressions at around age 10, between the physical pain, emotional pain (the loss of dreams, being bullied for being different, losing friends and family who don't understand how these things limit what we can do, or down right saying you're faking it. And doctors who have no idea, often they can't admit that THEY don't know therefor it doesn't exist. My son even had teachers who after they were shown his dx told him he was lying as he didn't seem in pain at school.) this I didn't find out till 2 months into summer. My daughter has missed most of high school which she lived, no dances, very few games, no prom. These type of things make the depression worse, in turn making the pain worse. Right now my son is off most of his lmeds so we can try to figure out what is going on Neuro wise. But since being schooled on line so we can deal with pain and sublaxations, although he is now going through puberty and the almost weekly migraines that make reading something he already has problems with all but impossible. But mentally he is much better. They both have had counseling during their depression, and still have times when it is needed. You may not be able to do much for her physical pain, but you being there, helping her and giving emotional support, standing by her, fighting by her side for her... That is doing more good than you know! And the internet has a lot to offer as far as finding something that might help, groups on facebook, especially local facebook pages can offer in person support groups, as well as doctor referals, finding doctors who are versed in EDS, different medical options, physical therapy and even dentistry. Tumbler also has a lot of people who share their own EDS struggles. There is also support out there for you as her mom and as a supporter and caregiver.Anonymoushttps://www.blogger.com/profile/00809452416096393640noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-36021265689688961202016-02-11T19:37:51.182-05:002016-02-11T19:37:51.182-05:00I have a 17year old daughter, as well as a 12 year...I have a 17year old daughter, as well as a 12 year old son and my self,who struggles with the pain of EDS and the related conditions, as well as the problems the medications have caused. The underlying conditions treatments have done more harm than good. Like a lot of chronic pain victims, my kids fell into deep depressions at around age 10, between the physical pain, emotional pain (the loss of dreams, being bullied for being different, losing friends and family who don't understand how these things limit what we can do, or down right saying you're faking it. And doctors who have no idea, often they can't admit that THEY don't know therefor it doesn't exist. My son even had teachers who after they were shown his dx told him he was lying as he didn't seem in pain at school.) this I didn't find out till 2 months into summer. My daughter has missed most of high school which she lived, no dances, very few games, no prom. These type of things make the depression worse, in turn making the pain worse. Right now my son is off most of his lmeds so we can try to figure out what is going on Neuro wise. But since being schooled on line so we can deal with pain and sublaxations, although he is now going through puberty and the almost weekly migraines that make reading something he already has problems with all but impossible. But mentally he is much better. They both have had counseling during their depression, and still have times when it is needed. You may not be able to do much for her physical pain, but you being there, helping her and giving emotional support, standing by her, fighting by her side for her... That is doing more good than you know! And the internet has a lot to offer as far as finding something that might help, groups on facebook, especially local facebook pages can offer in person support groups, as well as doctor referals, finding doctors who are versed in EDS, different medical options, physical therapy and even dentistry. Tumbler also has a lot of people who share their own EDS struggles. There is also support out there for you as her mom and as a supporter and caregiver.Anonymoushttps://www.blogger.com/profile/00809452416096393640noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-5832551029200555152013-04-22T00:58:58.979-04:002013-04-22T00:58:58.979-04:00a neurological disorder???a neurological disorder???LilMissMonicahttps://www.blogger.com/profile/12056264232177775216noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-41495654530928199542013-02-25T12:13:54.455-05:002013-02-25T12:13:54.455-05:00Excellent post. Thanks for sharing your thought.
...Excellent post. Thanks for sharing your thought.<br /><br /><a href="www.londonfostering.org.uk" rel="nofollow">fostering agencies London</a>Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-37434296428116180072012-11-25T08:33:47.439-05:002012-11-25T08:33:47.439-05:00I can certainly understand Dorian's feelings o...I can certainly understand Dorian's feelings of no hope. My daughter is 18 and is in incredible pain from EDS. It feels like there is no hope when she is at her worst and I don't know how long she can keep doing this. We're working with doctors, but her pain is certainly not managed.Unknownhttps://www.blogger.com/profile/04771208572430680302noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-34231454344919748102011-05-08T06:32:45.994-04:002011-05-08T06:32:45.994-04:00I think the title is misleading it seems her relie...I think the title is misleading it seems her relief is from chiari, which is a different, but apparently linked to eds, disorder..Emmahttps://www.blogger.com/profile/09741788737588200682noreply@blogger.comtag:blogger.com,1999:blog-4432236084277616274.post-49160123077298153002010-12-05T11:28:03.064-05:002010-12-05T11:28:03.064-05:00I'm confused. I also have been diagnosed with ...I'm confused. I also have been diagnosed with EDS, but I've never heard it be termed as a neurological disorder. It makes sense that it would affect the nerves, but my neurologist told me that EDS has nothing to do with the nerves. Your story sounds like mine (minus the surgeries...I'm still suffering). Check my story out at www.youtube.com/livingwitheds. I would like to know more about the surgeries that are allowing you to live without all of these ailmentsUnknownhttps://www.blogger.com/profile/05781871441699252234noreply@blogger.com