tag:blogger.com,1999:blog-34940564.post5967128193946535119..comments2023-11-25T01:12:34.326+00:00Comments on Benefit Scrounging Scum: Rare Disease Day - Ehlers Danlos SyndromeBenefitScroungingScumhttp://www.blogger.com/profile/08939136229593231935noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-34940564.post-25059495933116231792015-06-07T09:04:26.777+01:002015-06-07T09:04:26.777+01:00Dv doesn't cause hyper mobility though and cer...Dv doesn't cause hyper mobility though and certain eds types can also be diagnosed by biopsy and blood test It's crap having a syndrome and then being asked if your battered or if you batter your kids Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-69720218302659048952013-06-18T13:43:33.270+01:002013-06-18T13:43:33.270+01:00Isn't it the case for some people that as they...Isn't it the case for some people that as they get older or if they don't have the support or education that their muscles over-compensate to try and counter the hypermobility?Anonymoushttps://www.blogger.com/profile/03057377192556952794noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-74211527807590046122013-02-21T07:46:24.887+00:002013-02-21T07:46:24.887+00:00my doctors didn't listen so i printed of artic...my doctors didn't listen so i printed of articles with lists of signs and symptoms and ticked all the ones i had them presented them. after seeing that they either believed me or wanted to get rid. lol since then i have been diagnosed as have two of my three children.Georgiepoohhttps://www.blogger.com/profile/06053468824274016360noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-40218010803456064512012-03-03T15:30:09.496+00:002012-03-03T15:30:09.496+00:00Hi Kaiyla, i poped over here from Sue's blog. ...Hi Kaiyla, i poped over here from Sue's blog. I was dx with Fibro in 2004 age 37 and the (private) the rumatologist said in letter to my GP (I too was a hearsink patient!) I had quite lax elbows, fingers and wrists but my skin was fine. I didn't think much of it at the time, both my daughters are very bendy too.<br />My husband says he fell in love with my fine porcelain skin (a lot of my veins show blue and some viens wont work for blood tests, drips etc and big blue eyes (high mopia!at -11 they are pretty big) I was great at ballet but rubbish at anything needing hand eye co-ordination. My sister can still forward flex with hands on the floor but I'm a lot less bendy with more spasms now im old. I have over-use injuries in my shoulders, elbows, wrists and just had TVT bladder surgery after years in pills. As I get older I am in more pain, my IBS and colitis are worse, I don't chew my food either, it is tiring. I have realised reading your blog and following links that I also have other things, tiny jaw, tmj, dowagers hump, crepitus in my knees, neck and fingers... What exactly do you mean by the way she holds her head?<br />I'm currently trying to find out more about being 'hypermobile' due to being migrated from IB to ESA and fearing the worst, but not putting anything much about hypermobility on the ESA as I didn't realise the extent of it before I found your blog. So thanks and keep up the good work, I really hope you get your chair soon :-)Toulousehttps://www.blogger.com/profile/06927788074641171020noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-55181403256640654832012-03-01T19:38:46.821+00:002012-03-01T19:38:46.821+00:00wtf - how is trying to dislocate a finger a recogn...wtf - how is trying to dislocate a finger a recognised test for hypermobility? I can't see how a GP can legitimately block a referral to an expert for diagnosis because their completely made-up diagnosis failed? Sometimes just repeating, 'yes, but I have the symptoms of (x) and I want a referral to a consultant with the correct specialism for diagnosis' can help. Good luck with the new surgery!misspiggynoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-42210323260745686182012-03-01T00:35:01.547+00:002012-03-01T00:35:01.547+00:00I must check with my new GP since I've changed...I must check with my new GP since I've changed surgery. When I mentioned to my old GP that I wanted a referral to a rheumy to get officially diagnosed as hypermobile, he pulled my finger (which was never that bad anyway) and said I wasn't hypermobile because he couldn't dislocate my finger. I asked if he wanted to check anywhere else - or look in my records - but he said there was no point. As a child, I was my ballet and gymnastics teachers' dream child - I could do the splits three ways, could do all manner of things bending backwards etc, and as a teenager was in and out of hospital with dislocating/subluxing knees/hips ankles. As a 30-something (with a similarly high BMI) I can still touch the floor behind my feet, I regularly sublux my hips getting up to nortiness, and my thumb is regularly difficult and slips out of its socket. Oh, and I can still put my big toe into my belly button. <br /><br />My niece is clearly hypermobile (but undiagnosed), but fortunately my nephew (different sibling) was referred to portage when he still wasn't walking at age 2 - his hips were subluxing so much he couldn't weight bear. I have made my brother promise he won't make him do any gymnastics because I'm worn out now. <br /><br />Out of all the people I know with ME/CFS, about three quarters of us have some degree of hypermobility. In fact, for me, it was finding out that other people <b>couldn't</b> bite their own toenails that led me to think something was wrong. If you've always been able to do something, it becomes normal!emwithmenoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-86011908567729487782012-02-29T20:42:17.703+00:002012-02-29T20:42:17.703+00:00If EDS were looked for and found more often, thera...If EDS were looked for and found more often, therapies could be given to stop it interacting with/causing other conditions and killing or severely disabling people. <br /><br />There are so many red EDS flags when you look at the pictures and the article on Lois. The hands, the skin, the angle of her head, the leg pains, the not eating. The eating issues could perhaps have been mitigated if some of the amazing expertise in this country on EDS & gastric problems had been accessed. Managing exercise needs to be done differently with EDS, as the usual 'pacing' advice for CFS needs a lot of modifying if it's not to worsen things for bendies. <br /><br />It's such a good question - why won't most GPs try a few simple diagnostic tests when they see cases of CFS, ME or fibromyalgia? They know something else is usually a causative factor. Why is a blood test for arthritis the only thing most GPs do? <br /><br />Luckily the 7th GP I asked did do the basic diagnostic tests for hypermobility - after I asked him if I was hypermobile, that is. It took 25 years to get relevant help, from the age of 11. Kaliya's blog is one of the reasons why I got help before I lost everything.misspiggynoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-42295731768215240452012-02-29T18:35:28.899+00:002012-02-29T18:35:28.899+00:00Many people who are hypermobile also have Fibromya...Many people who are hypermobile also have Fibromyalgia which is also a condition that very little seems to be known about and one where people constantly misjudge you because you look okay on the outside, sometimes I wish pain showed green then maybe people wouldn't think you were putting it all on!FibroNewbiehttps://www.blogger.com/profile/16607875934476728958noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-84228683672273602852012-02-29T13:39:05.395+00:002012-02-29T13:39:05.395+00:00Also, someone with injuries that always "just...Also, someone with injuries that always "just happen" could be a victim of domestic violence.Matthew Smithhttp://www.blogistan.co.uk/blog/noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-11538284718795935752012-02-29T13:38:01.015+00:002012-02-29T13:38:01.015+00:00I discussed Lois's death with some people in t...I discussed Lois's death with some people in the ME community yesterday including someone who knew her (online, as she was bedridden and could not get out). Her condition was very classic ME and autopsy findings were similar to those of other people who died of, or with, very severe ME. I am not sure how her hypermobility contributed to her ME, as there are a lot of people with both, or with an ME-like condition that is later rediagnosed as EDS, but it does sound like her condition was cared for as best it could be. I wrote a more detailed article <a href="http://www.blogistan.co.uk/blog/mt.php/2012/02/27/me-sufferer-died-because-she-couldnt-eat" rel="nofollow">here</a> after the discussion I had.Matthew Smithhttp://www.blogistan.co.uk/blog/noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-2058492009057973962012-02-29T12:13:55.424+00:002012-02-29T12:13:55.424+00:00Wonder how many school children have this....could...Wonder how many school children have this....could be classed as emotional difficulty which can turn into behavioural too. A diagnosis would change lives in instant. Good article Kali.Hellohttps://www.blogger.com/profile/02622208944935355868noreply@blogger.comtag:blogger.com,1999:blog-34940564.post-35055791784279596122012-02-29T11:54:28.008+00:002012-02-29T11:54:28.008+00:00Thanks for your post. I also have EDS, diagnosed ...Thanks for your post. I also have EDS, diagnosed at the age of 28, ten years after my debilitating symptoms began. Before I was diagnosed, I was told to my face by a GP that I was a 'heart sink' patient, and that it was a 'negative attitude' that made me too ill to work. I'm still getting my head around the fact that, if only I had had those cheap, simple tests for EDS ten years earlier, I would have been saved all this, plus incorrect diagnosis and inappropriate treatment.<br /><br />All the best, good luck.Flexible Personnoreply@blogger.comtag:blogger.com,1999:blog-34940564.post-5113893242155299862012-02-29T11:47:07.794+00:002012-02-29T11:47:07.794+00:00I love your blog it's always informative and y...I love your blog it's always informative and your description of how to spot a person with hypermobility describes my daughter and I to a tee. If only my new Rheumatologist would open his ears and listen we'd get on so much better. Still I should soon have a copy of my Rheumo file from my old team so maybe he'll believe the notes, after all what do I know I'm only the paitent. Keep up the great work, hope all goes well for you.erosenoreply@blogger.com