tag:blogger.com,1999:blog-4896114346747150572.post3500179513852380798..comments2023-04-28T11:50:06.993+01:00Comments on Amy's Mystery Illness: Bendy pictures and more!Amziehttp://www.blogger.com/profile/01639288209900035382noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4896114346747150572.post-29607182377058481542015-09-30T19:17:43.851+01:002015-09-30T19:17:43.851+01:00I know I'm a little late to the game for this ...I know I'm a little late to the game for this post, but you might want to look into lipedema (or lipoedema in the EU). Your legs look like you could be in stage 1, and apparently a lot of us are hypermobile as well. Just wanted to put it out there!Anonymoushttps://www.blogger.com/profile/00426503884558153284noreply@blogger.comtag:blogger.com,1999:blog-4896114346747150572.post-61091213181380337302014-12-08T10:27:10.407+00:002014-12-08T10:27:10.407+00:00(part 2...)
There’s no treatment for EDS itself,...(part 2...)<br /> <br />There’s no treatment for EDS itself, but getting diagnosed can help a huge amount with getting the right types of physiotherapy, pain treatments, and disability benefits. There’s also a lot of support available from EDS charities and other people with the condition. So I think it would be well worth you trying to get properly assessed for EDS Hypermobility type. Why don’t you print off the article from the EDS Support UK site, take it to your GP and ask (very very nicely!) if he or she might reconsider referring you for testing?<br /> <br />Please feel free to email me about this. I could help you find some more research to support your case if you like.<br /> <br />Really good luck! Ceri Teasdale.Anonymoushttps://www.blogger.com/profile/03671441587107102034noreply@blogger.comtag:blogger.com,1999:blog-4896114346747150572.post-28168382852599604502014-12-08T10:25:57.762+00:002014-12-08T10:25:57.762+00:00Hi Amy,
I’ve looked at your blog a few times. I ...Hi Amy,<br /> <br />I’ve looked at your blog a few times. I know I’m not the first person to tell you that you have many of the signs and symptoms of Ehlers Danlos Syndrome Hypermobility type.<br /> <br />I don’t like criticising doctors as it’s an incredibly hard job, but I think your GP was incorrect when she told you that you can only have EDS if you have a family history of it. That’s true of several types of EDS, but not Hypermobility type. I have EDS Hypermobility type and no one else in my whole family tree has it. The gene (or genes) that cause EDS Hypermobility type haven’t been found yet, so the inheritance pattern isn’t fully known.<br /> <br />There’s a great article explaining how Hypermobile EDS can be inherited on the Ehlers Danlos Syndrome Support UK website, here ( http://www.ehlers-danlos.org/what-is-eds/types-of-eds#hypermobile ) Please note this line “The gene alteration can happen for the first time in an individual, so there may be no previously affected family members.” – So you could, like me, be the first person in your family with EDS Hypermobility type.<br /> <br />(My comment is too long, so I’m splitting it into two sections!)<br /> Anonymoushttps://www.blogger.com/profile/03671441587107102034noreply@blogger.comtag:blogger.com,1999:blog-4896114346747150572.post-21266926181114512852014-12-08T00:12:29.581+00:002014-12-08T00:12:29.581+00:00This comment has been removed by the author.Anonymoushttps://www.blogger.com/profile/03671441587107102034noreply@blogger.comtag:blogger.com,1999:blog-4896114346747150572.post-25443374804396327782014-09-27T23:04:08.839+01:002014-09-27T23:04:08.839+01:00The picture of your spine shows lordosis and is so...The picture of your spine shows lordosis and is something you should have a physical therapist look at. I have this problem too and it causes no end of issues with my back, hips, and knees. It can be caused by muscular weakness or imbalance and anterior pelvic tilt. My understanding is that it is common for hypermobile people to stand with their joints at the end of their range of motion, hence chronic hyperextension of the lumbar spine and knees as you are showing in your photos. A physiotherapist familiar with hypermobility should be able to help. Good luck with your diagnoses! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4896114346747150572.post-23104148843624613292014-08-21T19:45:41.793+01:002014-08-21T19:45:41.793+01:00Your pictures look like mine I'm trying to get...Your pictures look like mine I'm trying to get pictures of mine to try and get a dr to listen to me because they're getting worse. My back has a big curve too a physio actually thought I had curvature of the spine but recided I didn't after seeing me move and bend more@robotpinemarten from twitternoreply@blogger.comtag:blogger.com,1999:blog-4896114346747150572.post-74064457852399850442014-04-25T14:39:45.209+01:002014-04-25T14:39:45.209+01:00Your pictures could be me, down to the stretch mar...Your pictures could be me, down to the stretch marks on your calves. My thumbs are the only joint that isn't hypermobile. I can touch wrist / forearm with thumb etc and my back is the same! You are a walking advert for EDS Hypermobility! I was diagnosed in 2011 aged 37 after a life in severe pain and being labeled as having somatiform disorder. I was also diagnosed with postural orthostatic tachycardia syndrome 4 months before the EDS diagnosis. It took 4 years to get the drs to accept I was ill and a year bagering the gp and changing practice's to finally get the referrals I needed. Keep fighting hun.<br /><br />Rachel@themyastheniakid.blogspot.co.ukThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.com